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» LymeNet Flash » Questions and Discussion » Medical Questions » Long Term Antibiotics ...

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Author Topic: Long Term Antibiotics ...
Mrkennyp
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As someone that is about to get tested for lyme after 8 years of having "the rash" and many years of weird symptoms. I'm very wary about long term antibiotics. Personally, my mother died as a result of a resistance to antibiotics. Is there anyone that has been cured without popping tons of pills for months or using IVs for months/years? I'm well aware of the various treatment protocols so I don't need a lesson on that. Just personal perspectives. Any perspectives will be greatly appreciated
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HW88
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Check out the hyperbaric chamber thread or chat with phoiph if you are looking for an alternative to antibiotics.

Also many others here are doing other things than antibiotics...hopefully some will chime in.

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Brussels
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I would never take antibiotics again unless there are NO other options.

Certainly, it is possible to get off lyme without antibiotics. But it may take time (also with antibiotics, it usually takes time).

Google:

- dr. Rau and Paracelsius Clinic in Switzerland, lyme.

- Stephen Buhner Healing Lyme herbs.

- Bee venom therapy, lyme

- PEMF, chronic illnesses

- biophotons, Bionic 880, PE1, borrelia nosodes

- Rife machines and lyme

- Dr. K. , ART, lyme disease, Rizols
....

you'll have enough to read, I guess...

I got well with barely any drugs, and so did my daughter.

And other people from this forum too (read the success stories thread).

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t9im
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I have never heard of anyone eradicating a borrelia burgdorferi infection without taking antibiotics.

As for antibiotic resistance, I don't think one has to worry with doxycycline and tetracycline and most of the other "Lyme" antibiotics.

There may be some issues with some others like Rifampin used for Bartonella.

Good luck and it is best to do your own research as you can see opinions differ.

--------------------
Tim

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dbpei
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Katina Makris has healed from Lyme disease without ABX. She is author of 2 books about Lyme disease:

Out of the Woods: Healing from Lyme Disease for Body, Mind, and Spirit
and
Autoimmune Illness and Lyme Disease Recovery Guide: Mending the Body, Mind, and Spirit

I know she is not the norm. But it is good to know that people can get well without having to use ABX. At this point, I will do whatever it takes!

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Brussels
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My daughter and I too: we took abx only at start, remained ill, but after so many bites, we left drugs away.

It took time, but we fully healed WITHOUT drugs.

Dr. K. says the opposite: he hasn't seen anyone bitten AFTER year 2000 getting better only with antibiotics.

The more recent the bite, the lower the effect of cocktails of antibiotics.

People improve fast, then relapse weeks, months even years later.

Antibiotics used to work better before 2000, in his clinical experience. If you only got an old bite before that year, it could be worth trying some abx.

but of course, this is just my opinion!

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Tincup
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An excellent new video is linked below showing what treatments Lyme patients are doing and have been doing, from LymeData. The percentage of what was effective and not effective are on charts there.

Less than 50% of those who tried the most common alternative therapy were satisfied with the results. (Herbal) And the satisfaction rates all drop from there for other alternatives.

So yes, you will hear from some people who think they are cured, but I've never seen any of them NOT come back due to a relapse.

The section I am talking about is at about minute # 23 or 24, but I recommend watching the entire presentation.

https://www.youtube.com/watch?v=VegR2RxAdAQ

As for antibiotic resistance.... even the IDSA says there is none with Lyme disease.

Personal opinion? I wouldn't want to be the one who wishes for the rest of their lives that they would have tried the antibiotics FIRST, after the other treatments have failed and I'd gotten much worse, and kick myself forever and ever for being so hard headed about avoiding them when there is NOTHING that supports any of the other treatments.

And no, like many others- I HATE taking antibiotics. But, I do kind of want to live.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Brussels
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Tincup, come on!!

either we are all lying, or what?!

Well, if you believe there is no antibiotic resistance, you have to read parts of this book.

At least a couple of pages around 195.
http://dropbox.vcell.uchc.edu/Dunham-Ems/borrelia%20book/Borrelia%202P_dss.pdf

This is a microbiology book ONLY ABOUT BORRELIA BURGDORFERI!!

552 pages of studies!

This book explains why there people think there are only 2 antibiotics from which Borrelia is already resistant (erythromycin is one).

Borrelia in fact, borrowed resistance to erythromycin from another bacteria, Staphilococcus aureus (page 191).

The method researchers normally use are insufficient.

Borrelia may BORROW genes from other bacteria that are resistant to MANY antibiotics in order to resist against antibiotics!

They may BORROW THE GENES to incorporate and act in their favor!

" Four other foreign genes expressed from their own promoters confer antibiotic resistance in B. burgdorferi: (they) confer resistance to kanamycin, spectinomycin, lincomycin, and sisomycin or gentamicin, respectively (Sartakova et al., 2003)." (page 191)

"These studies clearly indicate that some foreign antibiotic resistance genes can be expressed from their own promoters and used as selective markers in B. burgdorferi"


Researchers usually do not look for the right genetic markers!

In the subject-matter of Borrelia, research has to evolve, because the pathogen is light-years ahead of the IDSA!! [Big Grin]

[ 05-31-2017, 06:12 PM: Message edited by: Brussels ]

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Phoiph
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"...Less than 50% of those who tried the most common alternative therapy were satisfied with the results. (Herbal) And the satisfaction rates all drop from there for other alternatives..."

This info is based on a "satisfaction" survey, not a study that controls variables, so it raises many questions as to how the data can be interpreted.

For example, how do we know that someone who reported herbal therapy as unsatisfactory didn't try it for a just a few days only? How do we know what herbs were taken, or in what combination with other therapies?

For someone who reported hyperbaric therapy as unsatisfactory, were they talking about high or low pressures? What was the frequency and duration of their treatment?

Personally, if I had read those "statistics" regarding hyperbaric, I would likely have not tried it, and would not have my life back today.

IMO, there are too many individual variables involved with each of these therapies to accurately present generalized results such as this. I truly hope these survey results will be taken with a grain of salt, and won't deter those from alternative therapies who might be helped or cured by them. (Unfortunately, people with Lyme are often not at their best in analyzing information.)

Also, I wonder if even 50% of antibiotic users are satisfied with their results? After all the years people have been using antibiotics for chronic Lyme, do we have any real statistics on their efficacy?

"...So yes, you will hear from some people who think they are cured, but I've never seen any of them NOT come back due to a relapse."

Tincup, are you saying that you do not know of any person who has become well with alternative therapies that hasn't relapsed?

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sixgoofykids
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quote:
Originally posted by Tincup:


So yes, you will hear from some people who think they are cured, but I've never seen any of them NOT come back due to a relapse.


I haven't come back due to a relapse .... I've been cured since 2009. I'm not dead yet, so I don't know if I will make it through the rest of my life without relapse, but so far, so good.

--------------------
sixgoofykids.blogspot.com

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sixgoofykids
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I used antibiotics for almost two years. I got to a point where I'd get better, then get worse, then better, then worse. Usually the "better" parts were when I was taking massive antibiotics and antimalarials. The "worse" was when I'd switch over to herbs.

I thought I'd try something different because I could see that for me this cycle was going to continue for a long time. I was doing everything the ILADS guidelines say to do and was going to a well-known ILADS LLMD.

I treated parasites (on my own with herbs), heavy metals (with the LLMD), worked hard on my gut, treated mold toxicity (with the LLMD), detoxed, etc.

Then I went to Germany for photon treatment. The photons got rid of the borrelia. Once the borrelia was taken care of, my immune system was strong enough to take care of the bartonella and babesia. When the babesia caused too many symptoms, tonic water would help, but I didn't really treat it after treating the borrelia with photons.

After continuing photons for a year, eating healthy, exercising, getting adequate rest and sleep, I was well. I have done nothing for Lyme or coinfections since 2009.

People will point out that I did use antibiotics, and I will say, I was close to death's door when I took them and they saved me, but they did not get me well.

--------------------
sixgoofykids.blogspot.com

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HW88
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Interesting feed.

I find I just keep finding different things that chip away at.

Unfortunately I don't know that there isn't a one size fits all to getting better. We have to decide what is best.

It's so nice that everyone has good input stories here though. No matter how they got better, it's just nice to hear they got better.

Hope...

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Brussels
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Daughter and I are exactly like Sixgkids: since 2009, we're lyme free.

I got a tick bite again yesterday, 3rd of the year, and so far I'm fine!

I'm still not dead yet, but so far, no more relapses either for both of us.

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momintexas
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I did long term abx. They did not get me well.

My experience certainly isn't the same as everyone else's, but for me, there was far more to Lyme treatment than just abx.

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Phoiph
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I just reached the 5 year Lyme-free mark, thanks to mHBOT.
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Tincup
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Brussels,

Thanks for sharing the book info. I did go thru it for several hours. I picked up on things that you wouldn't probably, and you picked up on things I wouldn't have. Good to compare notes.

I do want to say that the book is an IDSA handbook of their own studies with their own theories.

And I am sorry you seem turned around by my post. I think you've addressed what I would say if I responded to you, in your own post here.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/135960?

I think one difference is the wording. Some people say after they have treated (with any treatment type) that they are "Lyme free".

I would say they are "symptom free".

And as your referenced book pointed out and we all know, there is no known cure for Lyme disease that makes everyone well.

And there is no test to prove a cure (total elimination of all bacteria).

And even if someone is currently "symptom free", which is delightful news for me to hear, it doesn't mean they are "Lyme free" and they can, as you pointed out in your other post- relapse.

It could take a week or 20 years. I've seen both extremes.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Phoiph

Nice to see you join in the conversation.

And yes, as you pointed out, all studies are different and come from differing view points. No problem understanding that at all.

You said... "Tincup, are you saying that you do not know of any person who has become well with alternative therapies that hasn't relapsed?"

I should have broken it down better I guess. Let me try again...

I do not know of anyone with chronic Lyme and coinfections who only did alternative treatment (no antibiotics) who didn't relapse later.

I do feel many alternative treatments can help improve health in general and make some symptoms disappear and can heal some of the damage caused by infections, but none have ever been proven to "cure" Lyme disease. The same goes for antibiotics.

Hope that helps.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Six- there is the difference. I was referring to ONLY alternative treatment. My fault for not clarifying the statements further. Sorry.

Since you did antibiotics for a LONG time, then followed it up with health living and alternative treatments for various symptoms, you have been blessed for your continuing hard work and dedication.

Some, who work as hard and do all they can to get well aren't that fortunate, but it gives me real joy to know you are doing well now. And I pray that continues for you. You know I do.

But, as we all know, everyone's immune system is different, everyones load of bacteria, parasites, age, general health, etc. is different.

My hope is with antibiotics and as much other stuff as we can throw at this stinking disease and the damage it has done, many more will have good days to enjoy.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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HW, you said...

"Unfortunately I don't know that there isn't a one size fits all to getting better. We have to decide what is best."

Exactly! You got it! What works for one may not work for someone else. But, I think we all need to keep trying.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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mom in TX,

You said.. "My experience certainly isn't the same as everyone else's, but for me, there was far more to Lyme treatment than just abx."

Exactly! And we learn what is helping others (or not) as we move forward. For example, I don't know of anyone who has tried spreading honey all over themselves to try to cure Lyme. It is antibacterial, anti fungal, etc. so why not?

And in that report I shared we see some patients have chosen stem cell therapy, some hyperbaric, some herbs, etc. THEY are reporting on what they felt helped them the most and what didn't.

I think that is valuable info to consider as opposed to someone spreading honey all over themselves and making that choice with no input at all.

And, this is the same thing we do here each day, share with others what has helped us in hopes others may find some relief.

The link I shared with the Lyme data is nice because it tells the story of what is working the best and not so well for patients actually using the treatments and is organised as opposed to reading 15,000 posts here trying to sort it out.

Those patients opinions aren't dismissed or watered-down by the IDSA or anyone else's interference. These patients were given or allowed choices and those are their own reports of the results.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sixgoofykids
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Tincup, I did not have success with antibiotics then follow up with alternative for various symptoms.

I was NOT having success with antibiotics and was still very, very sick so gave up on antibiotics and did something different to kill the bacteria so I could get well.

In fact, I was in such bad shape when I went to Germany, I did not know how I would manage to handle the travel over there. I had to get off other treatment and was bedridden when I left. Then, when the alternative treatment took care of the infection, then I did more alternative treatments to regain health.

--------------------
sixgoofykids.blogspot.com

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sixgoofykids
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quote:
Originally posted by Tincup:


And there is no test to prove a cure (total elimination of all bacteria).

And even if someone is currently "symptom free", which is delightful news for me to hear, it doesn't mean they are "Lyme free" and they can, as you pointed out in your other post- relapse.

It could take a week or 20 years. I've seen both extremes.

This is not the medical definition of cure. Cure is to relieve the person of symptoms. of a disease. http://davidjernigan.blogspot.com/2010/07/am-i-cured-or-am-i-in-remission.htm…

If we've had chicken pox, we still carry around some of the virus.

If we've had strep, we still carry around some of the bacteria.

If we've had Lyme, we will still carry around some of the bacteria.

The difference between carrying the bacteria and having the disease is symptoms. The goal isn't to kill every single borrelia cell. The goal is to restore health. I don't need a test to prove that every bacteria is gone. I just need to be healthy.

--------------------
sixgoofykids.blogspot.com

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sixgoofykids
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quote:
Originally posted by Tincup:
it gives me real joy to know you are doing well now. And I pray that continues for you. You know I do.


Thank you! I feel very fortunate.

--------------------
sixgoofykids.blogspot.com

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Phoiph
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My point is that if someone who is searching for alternative therapies consults that table of non-scientifically gathered data, they will quickly conclude that alternative therapies are basically worthless. I feel this does a great disservice to the Lyme community.

Again, why not publish side by side opinions on how satisfied people are with antibiotics? At least then there would be something to compare (with caveats). Again...where is the data on antibiotic efficacy???

I agree with six...you don't base cure on eradicating all bacteria...we have more bacteria in our bodies than we have our own cells. Our immune systems keep the checks and balances.

I did antibiotics for 9 months, but only became more ill and debilitated. I was then was deemed an "antibiotic failure", and advised to quit by a well-known LLMD. I became homebound for 5 more years after that. When tested 5 years after antibiotics, I was not only more symptomatic, but I tested positive for active Borrelia infection, as well as highly positive blood smears for Babesia and Bartonella. I was near death before starting an "alternative" therapy (mild hyperbaric).

So, that blows the theory that taking antibiotics first took care of the infections, and the alternative therapy (in my case mHBOT) only cleared up the remaining symptoms and repaired damage.

Those of us who have become well work very hard here to tell our stories, educate, and coach others who, like us, have not become well with antibiotics. When data like this is published in an irresponsible and sloppy manner, it has the potential to do a lot of damage to those who might benefit from those therapies, especially those with cognitive issues that have difficulty critically analyzing information. (After all, the table is definitively titled: "What are the Most Effective Alternative Treatments?")

In addition, it promotes division of the Lyme community into two camps: antibiotics vs. alternative therapies. Sound familiar?

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sixgoofykids
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When I got to Germany, I also tested positive for an active borrelia infection. The doctor said it was a very bad case. Taking the antibiotics first definitely wasn't what took care of the infection.

--------------------
sixgoofykids.blogspot.com

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Brussels
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Sixgkids said:

If we've had chicken pox, we still carry around some of the virus.

If we've had strep, we still carry around some of the bacteria.

If we've had Lyme, we will still carry around some of the bacteria.


--------------------------
I'll add:

If you had any herpes virus, you'll carry it around your whole life.

If you had Mycobacterium tuberculosis, you may carry it too, your whole life, it's called a 'relapse' like lyme.

Relapses of chronic Hepatitis B virus HBV are very common.

Chlostridium difficile relapses are common.

Most malarial protozoans (like babesia) may come back, and you relapse.

Enteric infection relapses are very common:
one research found that in a group of patients with inflammatory bowel disease:

"During the period 1997–2001 there were 237 relapses in 213 patients!"

Recurrent UTI (urinary tract infection) may be often relapses, not new re-infections.

-----------------
MORAL of the story:


When you do not have a UTI any more (cystitis), do you keep telling everybody :

'I'm not cured from cystitis, but I am in remission from cystitis'?

Well, you'll be in remission your whole life, anyway!!!


When you are not with a bad diarrhea suffering from enteric infection anymore, would you say:

'In fact, I'm only in remission from enteric infection', because that means you can have a diarrhea again sometime in life ??!

Again, you'll be in remission your whole life too!!


I'm sorry, but there are some things that we, in the lyme community, think it ONLY HAPPENS to lyme patients!!

Relapses are one of them: it happens to so many diseases, it's not only lyme.

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Brussels
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Your neighbor asks you:

'How are you?'

You can't say 'I'm fine, thanks.'

No, no, no!!

you must say:
'I feel fine, but deep in my body, I harbor all these pathogens waiting to attack me again:

- urinary tract pathogens
- enteric pathogens
- bad strain from Echerichia coli
- Helicobacter pilori
- Candida albicans
- CAndida parapsilosis
- Mucor racemosus
- Mucor mucedo
- Aspergilus niger
- a couple of strains of mycoplasma
- a couple of strains of Borrelia
- babesiosis
- bartonella
- herpes viruses
- Streptococcus mutans
- other Strep and staph species
- C.dificile
- Mycobacterium tuberculosis
....

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Brussels
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-------------------------
And another myth in the lyme community: if you take antibiotics, you won't relapse!!

Just spend 15-30 minutes of your time to look at the literature on relapses (google MICROBIOLOGY, RELAPSE ANTIBIOTIC) and you'll find a PLETHORA of infections, chronic or not, that come back after right doses of antibiotics!!

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A last myth:
Borrelia is an exclusive bacteria, extremely hard to eliminate.

Again, more 20 minutes of your time:

Read about Streptococcus mutans, the common tooth cavity bacteria, that can become pretty nasty and infect your heart and even kill you.

Nothing can fight Streptococcus mutans in its chronic condition in our world today.

It has been DECADES of studies, we LOST the fight!! Chronic Strep mutans is with us to stay, and only immunologic weak people anyway will die of it.

(unfortunately, people like chronic lyme sufferers...)

Our only tool against cavities is to brush our teeth well!!

Where are the champion antibiotics to cure that extremely common chronic infection, that have been with us at least 500 years, if not more?

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Tincup
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Six, you said..."I was NOT having success with antibiotics and was still very, very sick so gave up on antibiotics and did something different to kill the bacteria so I could get well."

That is what others reported in the LymeData study. 20% were not having success with antibiotics so they later switched to alternative therapies.

Some saw good results, others didn't.

My original point (answer to the question) was people took antibiotics first, doing well or not, then moved on to alternative therapies.

And yes, I've seen good results from some doing it that way. What I said was for those who did NOT take antibiotics first and only tried alternative therapies...

I've not seen any of them who have NOT relapsed.

Sorry I wasn't more clear.

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Tincup
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The word "cure" has many definitions. I thought I explained what I was talking about when I said...

"And there is no test to prove a cure (total elimination of all bacteria)."

Perhaps I should have said...

There is no test to prove there has been a total elimination of all LYME bacteria.

If any forms of Lyme are left they can and have caused relapses. When that happens I can't logically say anyone is "cured", meaning (in my mind) a total elimination of all LYME bacteria.

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Brussels
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Why would anyone want to eliminate all the lyme bacteria, Tincup?

All infections above never are totally eliminated by any means, anyway, because people may relapse one day.

From candida, herpes, strep, staph, clostridium, mucor species, aspergillus.... too.


If you eliminate all candida from your body (supposing that is possible), you would be dead.

Candida-free, but life-free too!!


Most of us suffer longer from Streptococcus mutans than with lyme.

Nobody has ever totally eliminated these microorganisms (candida and strep mutans) from their lives!

Only death will tear them apart from us.


So, the only 'cure' for candida, Strep, bartonella, borrelia, clostridium, TB, all fungal species etc is death! In theory!

----------------------------------------
People like you think the bacteria is guilty for the disease, so curing the disease means eliminating the bacteria.

People like me think that lyme disease and all chronic infections are more like immune diseases, because many people are infected and do not develop lyme disease.

In fact, the majority of people do not develop lyme disease after tick bites (so far), so, putting the sole guilt on the pathogen as the ONLY cause for lyme seems not logic, in my view.

I got my 4th bite this year yesterday, from a nymph this time.

2 bites in 2 days!

Before, you bet that I wouldn't be here writing, but miserable somewhere.

Since my lyme symptoms totally vanished in 2009, I had about 40 tick bites!!

The average is about 5 a year.

My daughter has less bites, but rarely she gets less than 3 bites a year. So she got about 24 bites since her lyme symptoms disappeared.

Before, all I needed was one tick bite to put me in bed arrest.

Why should I call that 'remission' if EVEN 40 new fully attached tick bites do not make me ill with lyme disease any longer?!

Statistics say ticks in my area have 1:3 chances to have Bb.


My daughter follows the same pattern. first tick bite age 2, followed by arthritis. Multiple bites, one almost killed her at age 4.

Now, all these bites and she gets nothing?

What does it mean 'remission' for you if new infected bites cause us no lyme symptoms for the last 8 years?

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Tincup
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Brussels said... "Why would anyone want to eliminate all the lyme bacteria, Tincup?"

Cant speak for everyone, of course, but topping my list of reasons would be to reduce unnecessary pain and suffering in the world, reduce the chance of more people becoming chronically ill, reduce the chance of becoming totally disabled and reduce the chance of people succumbing to an early death.

Brussels said.. "People like you think the bacteria is guilty for the disease, so curing the disease means eliminating the bacteria."

ILADS

Brussels said... "People like me think that lyme disease and all chronic infections are more like immune diseases, because many people are infected and do not develop lyme disease."

IDSA

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Tincup
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Brussels,

I am shocked after reading what you've casually posted about your young daughter and feel she is in serious danger.

You said... "first tick bite age 2, followed by arthritis. Multiple bites, one almost killed her at age 4.... So she got about 24 bites since..."

I would hope with all sincerity that you would take time to better protect your child (and yourself) from additional tick bites.

You could use treated clothing, avoid areas with high populations of ticks and take measures like creating a "Safe Zone" to help reduce continuing exposure.

And yes, people can be exposed even when prevention measures are taken, but this amount of exposure is excessive and needs to be addressed.

I offer this prevention site link, that also has instructions on how to create a safe zone, in hopes you take immediate action.

https://sites.google.com/site/marylandlyme/hunters-corner

Please make it a top priority to protect your child. If you don't, no one else will.

And I can't stand the thought of losing one more child to this nightmare of a disease.

Thank you!

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www.DrJonesKids.org
www.MarylandLyme.org
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Tincup
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Phoiph,

It is no secret you are a hard core supporter and promoter of hyperbaric because you feel it worked for you, which is fine and I am so glad it did.

With that considered, there is absolutely no doubt in my mind that if the patient survey results had come back saying hyperbaric is near the top of the list of being the best alternative treatment, instead of it being 2nd to the bottom on the list, you would be praising those study results instead of kicking them to high heaven.

And had hyperbaric scored better based on Lyme patient's experiences I am sure you would not be referring to the study as being "non-scientifically gathered" or published in an "irresponsible and sloppy manner".

BTW- that irresponsible and sloppy label is totally not deserved or accurate. It is rude, not supported by facts and an insult to me and those who are working on and participating with this project.

`````````````````````````````````````````````````````

And had the results been more to your liking (high scores for hyperbaric treatment) I don’t believe you would be referring to thousands of people who participated- Lyme patients, doctors and researchers- as being something less than intelligent- or using the assumption that they are probably cognitively damaged as an excuse to explain their failure to support your views...

And/or you wouldn't be emphasizing that “people with Lyme are often not at their best in analyzing information”, meaning basically they incapable of responding to standard questions about their own health.

Bottom line, as I see it...

Patients across the country- over 7,000- gave their honest opinions and they simply weren't in agreement with your own personal opinions.

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You said... "Again, why not publish side by side opinions on how satisfied people are with antibiotics?"

It appears you didn't watch the video or "get" the purpose of the LymeData study, or understand the current place in time for the study or the reporting of its results, for whatever reasons. ???

Example- Lorraine also didn't talk about peanut butter and jelly sandwiches, but that doesn't alter or diminish the results of what she reported on.

And had you watched the video you should have noticed she had specific topics laid out for this particular video segment, even placing arrows pointing to the days topics she was going to discuss.

The effectiveness of alternative treatments was one of those specific topics, not the comparison of antibiotics vs. alternative treatments.

She will, of course and as she said, be presenting more data as time passes and after more questions are answered by the data being collected.

And in all fairness, Lorraine did mention, even though this wasn't her current "topic" for this particular presentation, that 20% of the patients reported they didn't have good results with antibiotics. Did you miss that part too?

`````````````````````````````````````````````````````

You said... "In addition, it promotes division of the Lyme community into two camps: antibiotics vs. alternative therapies."

No, these study results don't divide the community. The community was divided decades before this study was even a twinkle in its mothers eye.

Types of treatment are a personal choice that hopefully all patients can and should be making for themselves.

This data is an invaluable tool and can now be used as part of their decision making process.

Should this study have not asked some of the burning questions everyone has, like did alternative therapies work for you and if so which ones worked best and which ones were not as successful?

In my opinion, those are very good and reasonable questions that many people have asked all of us for decades and are desperately looking to find answers to.

The only other "official" choice we have is to listen to the CDC/IDSA garbage that says we don’t need any treatment and none of the treatments are any good, and accept that as fact. That would be sad.

In fact, the IDSA/CDC specifically recommends against hyperbaric treatment for treating Lyme disease in their guidelines, along with several other alternative treatments. At least this study is addressing the previously "forbidden" treatment options.

See page 1107 at this link.

https://www.idsociety.org/uploadedfiles/idsa/guidelines-patient_care/pdf_library/lyme%20disease.pdf

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I wanted to suggest if you had any further problems with this study to contact Lorraine. But, with your sour attitude at the present time, and having no solid facts backing your complaints, and her super busy schedule trying to do things to help ALL OF US, I feel you would just be wasting her time and insulting her even further.

And I personally believe the proper response to her hard work, dedication and this presentation should be a sincere "thank you".

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www.DrJonesKids.org
www.MarylandLyme.org
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sixgoofykids
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quote:
Originally posted by Tincup:
Six, you said..."I was NOT having success with antibiotics and was still very, very sick so gave up on antibiotics and did something different to kill the bacteria so I could get well."

That is what others reported in the LymeData study. 20% were not having success with antibiotics so they later switched to alternative therapies.

Some saw good results, others didn't.

My original point (answer to the question) was people took antibiotics first, doing well or not, then moved on to alternative therapies.

And yes, I've seen good results from some doing it that way. What I said was for those who did NOT take antibiotics first and only tried alternative therapies...

I've not seen any of them who have NOT relapsed.

Sorry I wasn't more clear.

You were clear, I just disagree. What you are saying is that those who did antibiotics first, then alternative sometimes did not relapse; but those who didn't do antibiotics first all relapsed.

I disagree with this comment. I do not believe the antibiotics made the difference for me. I wish I had found the treatment that worked first. It also seems most people do antibiotics first because that's how our medical system is set up. We get sick, the doctor says it's bacterial, we get antibiotics. We don't search for something else until they fail.

We'll have to agree to disagree on this point, I don't believe it's the antibiotics that makes a difference and you do.

This being said, I didn't have any luck with herbs alone used in the manner that antibiotics are used. So when I'm talking about alternative therapy, it's much more comprehensive than just taking and herb like you would just take an antibiotic.

Here's what Dr. H says about the relapse rate of antibiotics. The entire clip is good, but the part I'm referring to is at the 1:20 min. mark. https://www.youtube.com/watch?v=mHwHXF_v52Q So much more is needed than killing bacteria.

[ 06-02-2017, 02:16 PM: Message edited by: sixgoofykids ]

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sixgoofykids
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quote:
Originally posted by Tincup:


If any forms of Lyme are left they can and have caused relapses. When that happens I can't logically say anyone is "cured", meaning (in my mind) a total elimination of all LYME bacteria.

I realize that a lot of Lyme patients think this way, but it's not the medical definition of cure.

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Phoiph
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Tincup...

Please breathe! My comment was not meant to offend you, only to offer an opinion, which I am entitled to, and stand by. And, of course, you are entitled to yours.

I believe you still missed my point. It is not about the gathering of survey data (which is a good thing), it is about how it is presented in the video, namely the two tables entitled "What are the most effective alternative treatments", and "What alternative treatments have the most side effects".

This is anecdotal information, that shouldn’t be presented as definitive, as no variables are accounted for. There is no proof that any of those alternative treatments are the "most" or "least" effective at all, as the table implies. What the data tells us is strictly self reported information (which is valuable), but there are likely vast differences in how those therapies were used, which can greatly affect the efficacy of those therapies. IMO, The tables should be titled to indicate that this is a patient reported survey (e.g., “Patient survey of alternative therapy effectiveness”, etc.), or reported in a more inclusive way.

My concern is that the definitive and limited way the information is reported in the table may deter someone who might benefit or become well from an alternative therapy. As I mentioned, when I was very ill and attempting to research hyperbaric (while significantly cognitively impaired and unable to process), one glance at the data in that table would have discouraged me from exploring hyperbaric therapy any further, and I would not have my life back today.

And, for the record, it is completely untrue that I would change my opinion about the way the information was presented if hyperbaric was at the top of the list. My concerns apply to all alternative therapies presented.

Also for the record, when I referred to many people with Lyme having cognitive issues in relation to the study, I wasn’t referring to the people who are filling out the survey, designing the test, crunching numbers, etc., but to those who are reading the results and possibly making life-altering decisions based on those results, which is why IMO clarity and responsibility in reporting the data is so important.

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Tincup
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Six, you said...

"You were clear, I just disagree."

No, sorry Six. Obviously I wasn't clear because your rendition here of what I am saying is not what I am saying.

And I've apologized for not being clear about 3 times so far when I thought I actually was, so this is the last time I will address this goofy mix-up.

You said... "What you are saying is that those who did antibiotics first, then alternative did not relapse; but those who didn't do antibiotics first did relapse."

There is the problem. That is NOT what I am saying. People who do antibiotics first and then alternatives CAN and DO relapse.

What I have been trying to explain is for those who did nothing but alternative therapies from the get-go, in other words they made a conscious choice and skipped antibiotics totally...

"I", "me", "Tincup" (not you, them or whoever else) have not seen people who have only done alternative therapies return to a "virgin state" (no Lyme bacteria) and not relapse.

I am using that wording “virgin state” in lieu of the word "cure" because you seem kind of stuck on that one limited definition when there are actually many.

As you know, we aren't on a doctor's forum or testing for medical exams, so the word "cure" seemed to fit, and in fact I did follow up my original use of the word “cure" by saying the elimination of all bacteria so it WOULD be clear and it still wasn’t. Go figure? HA!

Very simply put again... I have not seen anyone who has done alternative therapies only, not relapse.

Now, unfortunately in this mix-up you are trying to insert your personal case/situation into my comment that was misinterpreted in the first place.

The situation is that you HAVE done antibiotics first. So YOU personally don't apply here and don't fit in my original scenario because you HAVE taken those years of antibiotics first.

Certainly share your thoughts, of course and you know what I mean, but trying to wedge your personal experience into my comment is like trying to put a round peg in a square hole, it doesn't fit because what you think I am saying is NOT what I am saying.

And what I am saying doesn't apply to you.

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You said.. "We'll have to agree to disagree on this point, I don't believe it's the antibiotics that makes a difference and you do."

First, it is not me personally, but 80% of those who took antibiotics believed it helped them. Please remember this is a study of over 7,000 patients and not me saying these figures.

And again, that is NOT what I said. People who take antibiotics and also do alternative therapy can and do relapse. It is quite common in fact.

My one casual comment that has been torn to shreds now so I don't even recognize it, is...

I personally have not seen and/or do not know anyone who has done alternative therapy only (no antibiotics) not relapse.

Can you hear me now? HA! And the good news is we don't disagree. In fact we DO agree. Who'd a thunk that after all this back and forth...

[lol]

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sixgoofykids
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No, actually, we don't agree.

1) I reworded one of the comments you quoted me on so that it meant what I was trying to say.

2) I think it's very hard to find someone who got well on alternative only not because alternative only wouldn't work (in my case it would have, it was antibiotics that didn't work for me), rather because the vast majority of people start antibiotics first because that's the standard care for a bacterial infection.

Phoiph and I both are disputing your casual comment because we disagree with it and believe wholeheartedly that our wellness did not have anything at all to do with our taking antibiotics at one point in our treatment. I don't question whether or not you personally know anyone who got better with alternative only. You probably don't. It's just not relevant to whether it would work.

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Keebler
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­­-­­
regarding sixgoofykids' posts, some basic info:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=125858;p=0

Topic: What is Photon Therapy?


http://lymebook.com/bionic-880-photon-woitzel-germany-pe1

BioPhoton Treatment with Dr. W -- Full Sample Chapter from book: Insights in Lyme Disease Treatment, by Connie Strasheim

Chapter 6 Bionic / Photon Therapy for Lyme Disease
-

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Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS
-

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Keebler
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­­-­­
UNDERSTANDING THE SCIENCE of how various tick borne infections operate matters greatly. And understanding the science of how a body with such infections is affected matters as well.

When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:

if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -

- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )

so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.

Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.

When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.

For those considering complementary support methods / or other avenues entirely:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Herbal Safety considerations & reference books; etc.

BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:

knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.

You can compare and contrast many approaches with links to articles, books, methods . . .
-

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Brussels
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Yep, definitively.

We got better without antibiotics, without any doubt.

The initial weeks on antibiotics did nothing to us, as I fell ill AFTER antibiotics, and my daughter fell ill DURING antibiotics.

I only went off lyme about 4 years AFTER my antibiotic finished. So in no way, antibiotics played a role on my healing.

Same as my daughter.

I, in fact, refused that she got IV Rocephin (fully covered by the insurance), because I did not believe it would anyway work on her arthritic knees.


And as for tick bites, they are like mosquito bites for us. We can't totally avoid them.

If you think the bacteria is guilty, well, you have to avoid the bacteria, at all means.


If you think the immune system is guilty, once you correct it, you don't have to avoid the bacteria at all means!

that is where the difference sits!


If the bacteria is guilty, the only way out is life in prison, as Bb is in mosquitoes, in our farm animals, in the sea animals (as you showed)..

and to make things better, dr. K. starts thinking there is some air-borne transmission of Bb!!

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Brussels
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I return to the question about other infections, such as Aspergillus niger.

Everyone who breathes air breathes in Aspergillus niger, indoors and outdoors.

If not daily, well, practically daily.

The 'pathogen' can be nasty and cause nasty health problems, infecting lungs, ears, eyes, and other organs when it enters the blood.

But normally, most people are NOT symptomatic.

does it mean, in your definition, that they are NOT CURED from Aspergillus niger??


By your logic, almost 7.5 billion people in the planet are IN REMISSION from Aspergillus niger, and NOT CURED from it, because they are harboring these fungi inside them or breathing them in EVERY DAY???

The words CURE, REMISSION don't even apply, as in spite of breathing in pathogens, most people never get ill.

Contact with it does not mean DISEASE!, if you see what I mean.

So most are fully healthy... BUT harbor Aspergillus niger in their mucosa.

And that consists in the majority of the population, not the minority.

The theory PATHOGEN = DISEASE absolutely does not work for most infectious diseases.

Absolutely not for Aspergillus niger!

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