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» LymeNet Flash » Questions and Discussion » Medical Questions » So can someone explain whats so dangerous about long term ABX?

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Author Topic: So can someone explain whats so dangerous about long term ABX?
Ahodge01
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Im very scared as ive never had a positive test and am treating. My LLMD says that ABX used long term are not great for you but wont do any irreversible damage.

My kidney function was slightly elevated at my last test but I believe this was from the Probenecid.

So what are the dangers of long term abx use, besides ABX resistance? I see some people here where on ABX for 3 years and got cured with very few problems. What constitutes long term use?

Surprisingly all my other blood test have gotten better since being on ABX... My electrolytes have balanced out, my albumin level is within range, but my creatine is slightly elevated.

Im just scared like everyone else, I wish I had a positive test to back up this "hunch" of lyme disease my doctor has but I guess.

Articles and links are greatly appreciated... God I turn 23 tomorrow and feel like im 60 I worry constantly. Sometimes I just want to give up.

Posts: 286 | From St. Louis | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
BackinStOlaf
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Yeast issues, C. Difficile, Resistance.
I feel like giving up too
I want to be my old self again

--------------------
First Symptom 9/09
Multiple docs, negative Labcorp test
LLMD: 1/10
Positive Igenex/CDC test
Treatment 2/10
2/10-8/10 Amox, ceftin, zith, flagyl
Currently: Bicillin, Minocycline, still dealing with severe breathing issues

 -

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Keebler
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-
Antibiotics can damage the liver. Some damage the ears. Most often, with certain precautions, damage can be avoided.

LIVER support and protection is an absolute must (liver support may also help protect ears). But, with that and excellent self-care - and PROBIOTICS &/or Olive Leaf Extract to prevent systemic candida infection from abx use ----

Well, with all the precautions and supplements, abx can be safely used long term. Lyme is one of the most toxic infections known to man. Lyme, itself, is toxic - so it has to be treated.

=========================

www.townsendletter.com/FebMar2006/lyme0206.htm

February/March 2006

BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST

by Prof. Robert W. Bradford and Henry W. Allen

EXCERPTS:

. . . A discovery of great importance relating to a toxin produced by the causative agent of Lyme disease, Borrelia burgdorferi, has been linked to a similar toxin produced by the organism Clostridium botulinum (botulism) *. . . .

=========================

3/4 of the way down page one are links for liver support and ear protection:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS

=========================

More links for supportive measures will follow.
-

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lightparfait
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I don't know anyone who is better long term on abx. I have only heard of keeping symptoms at bay with long term abx. and some consider that, better. Depends on how you want to live your life. Depends on your definition of better.

Some say symptom free without long term abx is the better I consider "better". Done with treatment. Not lifetime treatment. That's the goal.

Abx have their place and I have benefited from abx which did knock out my co-nfections...but found long term couses not beneficial for long term health.

A think the shorter courses of abx are the ones that get the job done. Long term usage can create issues as you suggest. Once short course is taken appropriately and monitored by the LLMD...there should be a "cutting off " point...and a move toward another treatment. As obviously it was not as effective as could be being symptoms exist when off abx.

Many take abx breaks and incorporate detox to help with herxes...and clear the body naturally.

Alergie-immune.de

worked for me...and I highly recommend you read the threads here on lymenet. Look thre for Dr. K's links and read them concerning lyme and toxin removal.

Need to find the root and proper treatment individually...no cookie cutter approach to all this. It is individualized medicine. What works for one patient, not necessarily works for another with abx or any pharma drugs. Some LLMD"s only have a few options they consider...some have a wider variety to offer. ND's usually have a great handle on how to treat lyme and when to move toward natural detox protocols.

I believe that most of the long term symptoms people experience are actually toxic symptoms...not necessarily pathogens...lyme, etc. The more abx, the more toxic chemicals you add to the brew, the more issues with candida/yeast/fungus and parasites...along with heavy metals. Then there's the emotional fall out...it all is part of the mix.

It has to be judged when the abx have done their job...and when to move onto clear the body and treat naturally.

In the beginning of my quest for lyme freedom, I was given some very good advice...

"follow the ones who have similar symptoms and issues as you...who are now better and free from living in lyme, and lyme protocols...and switch LLMD's if necessary to find the approach that clears it all"

I do knoiw those who were on abx for a few years an dgot rid of co-infections...then moved to detox...and are now free.

This has happened to me and my daughter as well.

so my experience is different than some of yours on long term abx.

I thin fear of herx and the unknown causies people to stay on abx after all that can be accomplished toward healing has already occurred...that's the tiping point and different for each...but there is a time to listen to your body and intuition, and know that a change in approach would be beneficial.

[ 04-30-2010, 06:43 AM: Message edited by: lightparfait ]

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Keebler
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-
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages

===========================

Chapter 1 from the book "Insights Into Lyme Disease Treatment"

http://www.lymebook.com/steven-harris

--------------

http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801/ref=sr_1_1?ie=UTF8&s=books&qid=1272566632&sr=1-1

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies

Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor)

============================

Important information about treatments options and support measures, supplements and self-care:

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)

- by Kenneth B. Singleton , MD; James A. Duke. Ph.D. (Foreword)

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com
-

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Keebler
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-
Many have improved with long-term abx but supplements are necessary support. It is rare that JUST abx provide complete success. It's the total combination of attention to all manners of body support along with infection fighting rotations.

The park ranger in the documentary "Under Our Skin" - and others, too, are prime examples of long-term abx being successful. Dr. Marz, featured in the film is also a wonderful example.

Other than in UNDER OUR SKIN, see his case described in article:

http://www3.interscience.wiley.com/journal/117994622/abstract?CRETRY=1&SRETRY=0

http://www.ncbi.nlm.nih.gov/pubmed/17212618

Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy

W. T. Harvey, D. Martz

-------

Excerpt: `` . . . one year after initiating the antibiotic and anti-protozoal treatment, he was declared to be free of motor neuron disease by his neurologist . . .'' from:

http://www.dreamdoctor.com/radio/battle.shtml

ALS Caused by Lyme Disease with Babesia Co-infection

=================

www.underourskin.com

Documentary: UNDER OUR SKIN

DVD is $35 and worth every penny. Some lyme support groups have this to loan.
-

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ping
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quote:
Originally posted by lightparfait:
I don't know anyone who is better long term on abx. I have only heard of keeping symptoms at bay with long term abx. and some consider that, better...

Absolute hogwash! Complete nonsense! Please don't listen to this crud!

I would be in the grave now without long-term abx tx. For almost 50 years I knew something was wrong and nobody could tell me what it was. My mother died of complications due to TBD's, my grandmother too! Long story short, I found out about Lyme AND CO-INFECTIONS!

Please be sure you have someone that will treat co-infections, even if you test negative for them, should you still have serious symptoms, then, it's something in addition to Lyme; Babesia, Bartonella, others.

Then, detox. You can help your body detox while your on abx. You must restrict the sugars in your diet and compliance in taking your meds, every day, on-time, is most important. Lots of info on this site about all this.

If you want, please email me at:

[email protected]

--------------------
ping
"We are more than containers for Lyme"

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Treelady
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They put people on long term antibiotics for zits. No problem.

They put people on long term antibiotics for UTI's. No problem.

They put people on long term antibiotics for prostatitis. No problem.

Long term antibiotics for Lyme disease....big problem.

I don't understand. Zits don;t kill you, neither do UTI's as far as I know or prostatitis. Lyme does.

--------------------
Treelady

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lightparfait
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"Absolute hogwash! Complete nonsense! Please don't listen to this crud!" you replied to me?


Ping: so glad you are finally better, healthy and healed on long term abx! You are the first I have heard of that chooses to stay on abx when they are all better, so I guess my opinion is crud...what do I know?

So glad you no longer experience issues or any residual problems from abx.

Accept my apologies..all who are finally healthy, and have no issues at all from still being on long term abx!

Sincerely,
lp

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nefferdun
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To the OP, I think you may test positive after you have been on the antibiotics for a while. I was told not to bother testing because the strain here in MT does not test positive. After two years of treatment I got the test and was very positive - even by DCD guidelines. However I did not test positive for bartonella even though I know I have it.

When you do not test positive, one of the ways to confirm the clinical diagnosis is to give abx. If you have lyme, you will often cycle every four weeks- your symptoms will wax and wane being much worse with new ones coming up when you herx. So if your doctor is unsure, a few months of abx will confirm the diagnosis based upon your reaction.

Gradually you should feel better and better. Know the side effects of everything you take so you can switch to something else if you experience problems.

Everyone is passionate about what works and what doesn't work. I have traveled both sides of the road for and against abx. I wish it was not necessary but I have relapsed twice when I quit too early. I think we are all experimenting with ourselves trying to find out what works for us individually. It is frustrating not to have a clear answer.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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joshzz
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lightparfait wrote, "I believe that most of the long term symptoms people experience are actually toxic symptoms."

Lightparfait with treatment people get better - maybe not cured but better. The idea that it's just toxins that linger indicates an ideology of being naive.

It's known the bacterium thats causes Lyme can resist an onslaught of antibiotics but by staying on treatment, one can significantly knock down the levels of spirochetes. It's a long battle - the enemy is strong.

That's why people continue to experience herxheimer reactions for years. Toxins, yes but they are being caused by active persistent infection not dead spirochetes.

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Brussels
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80 % of your immune system is said to be in your gut! Yes, the millions or billions of beneficial bacteria and yeast in your gut work to help your immune system kick off infections.

Abx will destroy most of them, good and bad bacteria in your gut, will make your candida or fungal infections grow because of imbalance.

Yeast infection causes almost the SAME symptoms than lyme and a bad yeast infection can kill AS WELL AS lyme disease can kill.

Both chronic infections can kill, and no one here seems to talk about chronic yeast killing.

No one in this world will convince me that trading LYME for candida is a good issue. I fought candida infections for MUCH longer than lyme, and believe me, lyme was easier to put it in remission, in my experience.

I am in FULL remission from lyme for now 11 months. No lyme symptoms, no lyme treatment, not even immune boosters, nothing. My only treatment now is a sort of allergy treatment and rechtsregulat (enzymes).

But I am in remission of candida for only 4 months. I'm still not sure that it won't come back, my 2 decade old candida infection.

Having said that, I used abx here and then, but only short term. I think they are very useful short term and wouldn't discard them when necessary. My problem is with long term abx.

I consider long term anything going on for more than a month. But that is my own definition!

No abx were initially designed to treat chronic infections. Physicians use that because they lack any other guns against chronic infections.

Bacterial resistance is one thing that is more than proved. It's only a matter of time for critters to develop resistance.

There's also all the residuals that go through urine and that are still active, that will be poured into the environment and help create super bugs all around us.

Most of the water supply, fresh water lakes, bigger rivers, not even in remote areas of the planet are free of abx residues. We wee abx out, they go somewhere, and many abx are still active for days after that happens.

There are MANY alternatives to abx. If there were none, I would agree, what to do?

But there ARE alternatives and many good ones!

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gwb
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I agree with what Brussels said. Here's an interesting article (portions of it) written by Dr. David Jernigan:

Quick Facts About Lyme Disease

From Beating Lyme Disease 2nd Edition:


Lyme Disease is initiated by a spiral-shaped
bacteria (spirochete) called Borrelia
burgdorferi, but the actual disease always
involves loss of the body's control of several
different ``co-infections'' of virtually every
microbial class, i.e., viral, mycoplasmal,
fungal, parasitic.

Toxins from the bacteria are actually the
primary cause of all of your symptoms!


Lifelong optimal health can be achieved even
if every single Lyme spirochete in your body
has not been killed.

It is well recognized that the best natural or
pharmaceutical antibiotics can at best only
kill 85% of the target bacteria in the body.


Antibiotics may do more harm than good.
Antibiotics can activate bacteriophages
(viruses) that infect the Lyme spirochetes and
insert their toxin-generating genes into the
bacterial chromosomes. These viruses can
turn basically harmless bacterium into killers
through this genetic sequencing of toxins by
causing the bacteria to produce greater
amounts of neurotoxins (nervous system
poisons).


The allopathic philosophy of medicine
(antibiotics, etc.) often predisposes one to
Post-Lyme Syndrome (PLS).

After prolonged illness a person would not
likely be symptom-free or truly healthy even
if it were possible to kill every spirochete,
because restoring health requires more than
killing the bacteria.


It is possible to have Lyme spirochetes and
yet never manifest any symptoms.

The unique symptoms experienced by an
individual are from the microbes revealing a
person's weakest, and therefore most
vulnerable, areas in the body.

High-powered microscopes have revealed
that our bodies are a soup of innumerable
and greatly unrecognized microbes. There
are 20 times more microbes than cells in your
body. Another way of saying this is that 90%
of the cells in your body are microbes.

A Herxheimer reaction (herx) is a sign of a
poor treatment plan and is unnecessary. A
herx greatly increases the toxic load on the
body; at its worst it can kill an illnessweakened
patient outright. A herx can
temporarily or permanently disable the body,
mind, and spirit.


The sustained restoration of the optimal
function and integrity of the body, mind, and
spirit will naturally resolve any infection.

No microbe can replicate at will or
unchecked in a healthy body.

A component in your blood called albumin is
six times stronger than penicillin as a
bacteriostatic (preventing microbial
replication).

Until the patient's body can maintain
microbial balance without the help of
medications, the patient will never reach the
point of not needing the medications.

Some of the best research facility laboratories
report that they have rarely found any
person's blood to be completely clear of
spirochetes, even after every type of longterm
natural or pharmaceutical intervention.


Source: http://beatinglymedisease.blogspot.com/

I thought this was interesting.

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lymebytes
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Really try not to worry and just do what you can to protect yourself. Some people are on "maintenance" abx a lifetime. I have been on them nearly 4 years.

You want to protect your liver from inflammation and your body from Candida albicans (yeast infection) and your intestines from C.diff.

Make sure to take Milk Thistle for liver protection.

Never miss a day of probiotics, so important!

The 2 probiotics I use are Jarrow saccharomyces boulardii (protects against C.diff) and Natures Way Primadophlius Optima (protects against Candida).

I take the saccharomyces boulardii once during the day usually after I eat, abx won't kill saccharomyces boulardii because it is a (good/protective)yeast, abx won't kill any kind of yeast.

The other probiotic must be taken 2 hours after abx, I usually take my last dose of abx at 8pm and probiotics before bed after 10pm.

Another good combo is Florastor (a brand name saccharomyces boulardii) and VSL#3 (you can google it and order directly form manufacturer online).

The best probiotics will need refrigeration and will have a high CFU. One (high profile) LLMd recommends 100 million CFU of probiotics daily, that could constipate some, but not likely really.

If you become constipated, lower your probiotics only slightly or better yet increase your daily water intake and/or take Magnesium daily to help keep bowels normal. If your bowels go towards diarrhea - take higher dose of probiotics. I have learned it is a delicate balance and I would rather be leaning towards constipation from probiotics than softer bowels on lower doses.

Other things you can take that will help keep Candida from forming - garlic and/or Olive leaf extract. Both are good natural abx as well.

The way I understand it, you aren't becoming resistant to the antibiotics, the bacteria does. For instance if you took Amoxicillin now for Lyme for a long period of time, you wouldn't be resistant if you needed it later in life for (example) an ear infection however, lyme may become resistant to it.

--------------------
www.truthaboutlymedisease.com

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micul
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The real damage comes from letting Borrelia, Bart, Babesia, Mycoplasmas and others go unhindered throughout the body....this is what causes serious damage to tissue and vital organs. I haven't had any damage from long term abx, or herbs as far as I know.

ABX gave me a normal life back too. The people that say otherwise did it wrong, or never addressed the right infection with a strong enough protocol for the right amount of time....reasons rangng anywhere from bad Dr's to the fear factor, or combinations there of.

ABX Will not cause c diff, candida, or any other problem as long as you follow a good diet, and a good probiotic is taken at the right time(s).

--------------------
You're only a failure when you stop trying.

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MariaA
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I've seen quite a number of prominent 'alternative' treaters, including myself, treat for years on end- just with alternative modalities, and seen several of them declare themselves cured or in remission several times, only go come back not long after, glossing over the supposed cured condition.

I don't think you guys are really in a position to tell people that long-term antibiotics don't work.

I've also seen, due to being here since '06, that most of the people who were on here at that time are long gone- presumably because they're out enjoying life having gone into remission on antibiotics.

I think the most likely problem with long-term antibiotics is when someone doesn't treat aggressively enough or with the right combination therapy. Attitudes like 'antibiotics are scary' is part of what leads to that.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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MariaA
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Also, the urban myth "80% of your immune system is in the gut" IS hogwash- immune cells and immune system signalling is a complex process that takes place all over the body. Pop medicine guys like Mercola tend to quote this nonsensical factoid that it's entered the public consciousness as a sort of mythology about the body, but there's nothing behind it. True, you should worry about your gut flora. Your flora and natural parasites stimulate some parts of the immune system and are responsible for many important activities in the body. But a)we're created to live with a wiped-out gut flora at times (that's one of the theories on why you have an appendix- people do lose their flora due to illness, and the body's figured out ways around that) and b)tons of people on long-term antibiotics do fine even with their gut flora compromised.

But to imply that antibiotics wipe out your immune system because they wipe out your probiotic flora is nonsense.

[ 04-30-2010, 01:56 AM: Message edited by: MariaA ]

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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MariaA
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As for the "beating lyme disease" quotes:

If toxins are the cause of most symptoms, how come no one's been able to figure out what they are, and how come simple tests of immmune system inflammation, such as CRP and tests for certain cytokines (the latter in medical studies, not done routinely for us) show that THOSE are what's elevated in sick patients? We know that certain cytokines cause the symptoms of flu and of some inflammatory conditions. I don't think toxins cause elevated cytokine cascades.

Active infection with a variety of pathogens, along with a screwed-up immune system, does cause symptoms due to immune activity such as out-of-control cytokine cascades and other forms of inflammation.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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MariaA
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wait, wait- I wanna call yet another statement "hogwash"

Your 'beating lyme disease' quote has THIS nonsense:

"The allopathic philosophy of medicine
(antibiotics, etc.) often predisposes one to
Post-Lyme Syndrome (PLS)."

What??? First off, there's no such thing as PLS- unless you're not treating someone well enough, in which case their 'Post-Lyme' is just a symptom of you calling them cured when they're not. I think the first writer to say "PLS" around here automatically disqualifies themselves from being a Lyme authority. I mean the author of that blog, not you, GWB, of course.

It'd be interesting to hear how many patients that author treated who had NEVER had allopathic medicine. It's a meaningless statement since most of us have a history of being treated for SOMETHING or another. It's also a blame-the-victim mentality- of course people who've had a lot of medical intervention in their lives have had it because they've been sick, and that means that their bodies may still be stressed/out of balance and unable to fight Lyme and co's effectively.

But the PLS statment pretty much negates anything else this expert is trying to claim.


Again, GWB, I don't mean you personally at all, I just take great issue with all the stuff you just quoted. IT runs counter to the science of this illness.

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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GiGi
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Antibiotics?

Anti means against. Bio means life.

Antibiotics means antilife - i.e. it kills just about everything, the good and the bad, and wipes out the immune system to the point of little defenses left.

Whether it can ever be restored after lengthy abx, is the big question. I doubt it. I had little of it and that just about wiped me out long enough - I would never do it again.


For an acute infection to save a life - for a few days, yes. Longterm no.

Sorry, Ping. You seem to be really suffering these days.

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Brussels
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Yes Maria, so you are in full remission, enjoying your life after many years of abx?

Well, I'm abx free, symptom free, and lyme TREATMENT free for now 11 months. From tomorrow on, I will be commemorating my first lyme free anniversary.

I'm now living in a country where people have NO IDEA what is lyme, much less, how to treat it. I can't find any homeopathics here, and if I'd like to get aspirin, I got to go to the doctor. Besides, I don't speak their language, so it makes things much more difficult.

I ONLY could move here because both me and my daughter are free of lyme. Before, I would never move from the country where I was being treated because of fear of being left without treatment.

Here, there is NO WAY to buy any abx without prescription.

Keep taking abx forever is a good thing for some people. I keep hearing that, that people decide to go on abx forever to keep their symptoms down and consider that 'remission'.

But if I were such a person, I would not be able to come live here. I would need to fill in my abx closet with two full years of abx before I came here! And they could get blocked in the customs, as it is forbidden to take prescription meds while moving in without declaring them.

If I declared there, no local doctor would agree on the amount needed during 2 years, so no way to get them in.

It is wonderful to be able to live a life without symptoms, even while taking abx forever, after we lived what we lived.

But to me, that is NOT remission. That is only living a life symptom free while being forever on treatment.

For me, the only true remission is to be both symptom free and treatment free.

If one thinks that symptom free life is enough, why not? As I said, being symptom free is already a great step to having our lives back and it is wonderful that some people achieve that with abx or whatever treatments, no matter which.

But I wouldn't be able to live where I live now. I got full blown lyme and so did my daughter. To have lived in fear, pain and desperation, we both know it.

We would be stuck forever to live in places where there is some lyme treatment available! Not my case now.

I was not even CONSIDERING moving out, as I lacked energy and will to do that. My husband knew we were too sick to move.

But here we are. It will be soon a year. I have not visited any doctor since I came and don't intend to visit any during the 2 years we stay here.

My daughter caught chicken pox and went to doctor ONCE just to get confirmation of chicken pox to give to school so that they could say 'chicken pox is around school' for other parents. That's all.

She, that had been in wheelchair, with lyme encephalitis, TBE, babesia, bartonela, mycoplasma, all the hell you guys know, she is now a soccer player, a ballet dancer and one of the first in her class. And believe me, English is not her mother language, so she caught up in less than 6 months!

I consider to start to be in remission from lyme fear too! We're both trying to heal from what we lived, the trauma of being sick with lyme and desperation of continuous sickness and suffering...

We still have the scar, both me and her, but we are dealing with that slowly and believing that time will heal those scars too.

Just don't assume that, because YOU didn't heal with all sorts of treatments you did, that others CANNOT heal.

I guess, it depends on personal targets, then. If some people are happy having to treat forever, so why not going the abx route forever? Or herbs forever? I mean, why not?

For newbies, I still say, try abx first because that's the standard treatment and decide later what to do, if you are still not well after a couple of months of abx.

If you hadn't gone through abx, how can one know it's not for you?

I keep hearing that this is the 'strongest' treatment that exists. I no longer believe that.

No one here can convince me of that because of what I lived and experienced with infrared photons and nosodes. Both me and my daughter.

We BOTH got bitten every year and got sick and sick again, on and off, either due to reinfection or to relapses. Now we're both in full remission and I don't attribute that to abx. Perhaps 1% to abx? (the only one that comes to my mind is Riamet, that helped my babesia symptoms in 3 days). The 99% rest comes from other treatments.

Do you guys deny that candida infection can also kill?

That ingesting 2 or 3 strains or PROBIOTICS will replace the THOUSANDS of DIFFERENT STRAINS of good bacteria in the gut that were killed by abx?

The few probiotic ingestion belief that you guys have, THAT IS science fiction, in my opinion.

What are all these thousands of strains doing in your gut? You chose to replace 2 of them, great, it's already a good step. But what about the other thousands?

Just keep on following lymenet. Almost every single chronic lyme sufferer will rage a war against candida at least once in their treatments.

And they will do that with ALL the guns they can, strict diets, no abx, loads of expensive probiotics, nistatin, all drugs and natural products they can put their hands on, and still many will not be symptom free. Candida is an stubborn infection, exactly like lyme.

Candida is undeniable as difficult to fight as bart and babesia, two awfully resistant infections. For me, it was harder than borrelia.

Some people can get easily around candida? Yes. The same way that some people can get easily around borrelia. And there are many! I was not one, unfortunately, nor my daughter.

Yes, some people used to get to full remission only with long term abx. At least, they were more numerous in the past, I feel.

The more lyme got widespread, I have the impression less people come with success stories ONLY taking abx. Of course, I'm talking about chronic sufferers, not acute infection.

You can also see that many people that believed in abx (and still do) still can come back to lymenet months or years later. Reason? Relapse or reinfection!!

Not only alternative treatments can result in relapses, but many old timers that got their lyme under control only using abx are back now in the forum.

Relapses can happen anytime. Relapse is NOT privilege of natural protocols.

We're all in the same boat.

Fortunately, success stories are still showing up. And fortunately, these are REAL TRUE stories!

That is my story, my daughter's story. Whatever you guys choose to do, it's YOUR story! Call remission what you want to, I just have my own 'definition', that's all.

In summer, I'm planning a long trip of almost 3 months away with my little one, full vacations in 3 different continents! I would NEVER had done that with a little child, if she still got lyme.

Full remission to me means that money, time, mind and spirit are NOT consumed by lyme disease anymore.

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NanaDubo
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from mercurylife.com - read on, antibiotics are mentioned.

"The link to mercury: in a study of rats given high doses of oral antibiotics, the half-life for excretion of mercury (i.e., the amount of time required for one-half of the mercury to be excreted from a rat) increased from 10 days to greater than 100 days. (Rowland IR, Robinson RD, Doherty RA,

"Effects of Diet on Mercury Metabolism and Excretion in Mice Given Methylmercury: Role of Gut Flora," Arch Environ Health, 1984:39(6); 401-408).

"In other words, antibiotics reduce the body's ability to excrete mercury, and tetracyclines in particular have been to shown to increase mercury toxicity (e.g., Prof. Boyd Haley of the University of Kentucky has found tetracycline increases thimerosal's toxicity to neurons)."

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massman
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Amen, Brussels, Gigi + Nana !

Changing the terrain is more important than only killing bugs.

The complexity of the disease + its coinfections is profound.

The toxins, I feel, create an internal terrain that weaken the immune system to allow lyme to have more effect on the body.

Where is the evidence that the gut is not the biggest part of the immune system ?

And Dr. Mercola ? I feel that he is ahead of the curve. My opinion comes from being a natural health professional for 25 years + treating thousands of patients.
---------------------------------------------
Reality trumps theory every time. [Cool]

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ping
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MariaA - Ditto! I couldn't agree more! I'm over 3 years off abx now and am so grateful to have had them; they saved my life.

lightparfait - You're right about one thing, you don't know what you're talking about. There are many people on this board and many that have left that got well with abx and have their lives back. Please consider this when you're typing your laboriously long, rambling and self-absorbed notes.

GiGi - You're so funny... Insulting, agenda-pushing and a fabricator, but very funny...

[ 04-30-2010, 12:31 PM: Message edited by: ping ]

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ping
"We are more than containers for Lyme"

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NanaDubo
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yep - I wouldn't have hung in there with AI for over a year if I wasn't interested in cleaning up the terrain. Pretty incredible results.

I posted somewhere yesterday that if you take a jar, throw in some water, a few bacteria, viruses , some heavy metals, fungus, yeast and the like - give it a good shake and call it a body - what are you treating? Just lyme? No and lyme thrives in that environment.

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ping
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NanaDubo, knock yourself out with it.

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ping
"We are more than containers for Lyme"

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NanaDubo
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Do you mean AI? I did and I'm all finished.

I don't have lyme.

All my blood work is perfect.

No elevated liver enzymes.

No side affects from abx.

Life is good and I don't need to attack people.

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ping
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Happy to hear it, NanaDubo. So why are you here?

--------------------
ping
"We are more than containers for Lyme"

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NanaDubo
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A number of people have asked me to still post and appreciate what I have to say.
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ping
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Okay. Question answered.

--------------------
ping
"We are more than containers for Lyme"

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gwb
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MariaA, I appreciate you sharing your point of view. I don't take it personally at all. I think those who put others down or insult them for what they believe is unnecessary and doesn't help persuade anyone to change their views.

I am fairly ignorant to a lot of this debate regarding pros and cons of antibiotics. But Dr. Jernigan is pretty much in agreement with what GiGi said in her post above,

"Anti means against. Bio means life. Antibiotics means antilife - i.e. it kills just about everything, the good and the bad, and wipes out the immune system to the point of little defenses left".

I read that Dr. Cowden seems to have this same viewpoint himself. Here's something I read about his views on antibiotics:

Dr. Wm Lee Cowden says that he has discovered that ``antibiotics do seem to work fairly well in a lot of patients. But, if they've had the illness for longer than six weeks, the chance of antibiotics getting rid of the infection, in my experience, is pretty unlikely, pretty remote. So, they're basically just guaranteeing that they'll stay on antibiotics for the rest of their life."

``The problem with staying on the standard pharmaceutical antibiotics long term," he says, "is that you kill off the friendly bacteria in your gut, and you cause an overgrowth of fungus in your gut, so then you trade one problem for another."

(The above quote is from my article on the effectiveness of Dr Cowden's Lyme protocol, in the Townsend Letter - The Examiner of Alternative Medicine, April 2007.)

Source:http://www.lyme-disease-research-database.com/lyme_disease_blog_files/7abd6a38942d612108f4594f4ae8073c-205.html

My wife got well on abx, so obviously I'm not an ANTI antibiotic proponent. But she was treated fairly early after her diagnosis. Unfortunately she did relapse and had to go back on abx again for 8 months. She's now taking natural medicines from Dr. Jernigan, like I am, and is feeling better than she's felt in years.

I was treated ten years after my diagnosis. I took abx for five years and was near death last December as you probably know if you read my "Hansa Center" thread.

All I can say is, I was once near death, but am now full of life and living and doing things that I hadn't been able to do for two years prior to being treated on natural medicines (Jernigan protocol) with NO abx whatsoever. That speaks for itself and that's all I need to say about it. : )

Gary

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ping
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quote:
Originally posted by Ahodge01:
Im very scared as ive never had a positive test and am treating. My LLMD says that ABX used long term are not great for you but wont do any irreversible damage.

My kidney function was slightly elevated at my last test but I believe this was from the Probenecid.

So what are the dangers of long term abx use, besides ABX resistance? I see some people here where on ABX for 3 years and got cured with very few problems. What constitutes long term use?

Surprisingly all my other blood test have gotten better since being on ABX... My electrolytes have balanced out, my albumin level is within range, but my creatine is slightly elevated.

Im just scared like everyone else, I wish I had a positive test to back up this "hunch" of lyme disease my doctor has but I guess.

Articles and links are greatly appreciated... God I turn 23 tomorrow and feel like im 60 I worry constantly. Sometimes I just want to give up.

Ahodge01, please don't give up. Getting rid of Lyme & co-infections is a long process. If your labs have improved and you're feeling better while on abx, then, you're doing something right. Everyone gets tired and depressed. Don't give up. Rest, then, move forward again.

--------------------
ping
"We are more than containers for Lyme"

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ott70
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quote:
Originally posted by MariaA:
wait, wait- I wanna call yet another statement "hogwash"

Your 'beating lyme disease' quote has THIS nonsense:

"The allopathic philosophy of medicine
(antibiotics, etc.) often predisposes one to
Post-Lyme Syndrome (PLS)."

What??? First off, there's no such thing as PLS- unless you're not treating someone well enough, in which case their 'Post-Lyme' is just a symptom of you calling them cured when they're not. I think the first writer to say "PLS" around here automatically disqualifies themselves from being a Lyme authority. I mean the author of that blog, not you, GWB, of course.

It'd be interesting to hear how many patients that author treated who had NEVER had allopathic medicine. It's a meaningless statement since most of us have a history of being treated for SOMETHING or another. It's also a blame-the-victim mentality- of course people who've had a lot of medical intervention in their lives have had it because they've been sick, and that means that their bodies may still be stressed/out of balance and unable to fight Lyme and co's effectively.

But the PLS statment pretty much negates anything else this expert is trying to claim.


Again, GWB, I don't mean you personally at all, I just take great issue with all the stuff you just quoted. IT runs counter to the science of this illness.

I believe the PLS statement by Dr. Jernigan is stating that continued use of anitbiotics, etc. could cure the patient of their malady but afterwards the medicine causes dysfunction in the body (PLS). Whole body dysfunction after a chronic illness is a medically accepted diagnosis.

I have read the same book as Gary, and it's worth reading, and I know that Dr. J credits a lot of doctors, natural and allopathic, for statements in his book. I'm not sure if that statement is from him directly, but it's not fair to bash him over that one statement when he presents many good points in his book.

As one treated by Dr. J, as Gary was, I can vouch for his knowledge on the subject of Lyme. Honestly, other than Dr. B, who really can state they are the "expert" on Lyme?

Dr. J is naturopathic and that's what you are treated with. When I saw Dr. J, he was happy that I had not taken many antibiotics. However, he said it's each person's decision in life and if they feel that the right path is to take some antibiotics, then so be it. He also acknowledges that antibiotics are a great thing for certain urgent cases.

For me personally, antibiotics torture me. My body doesn't care for them and that's the way I am wired. Bactrim and Minocycline messed with me and it was more than herxing. Zithromax I can tolerate okay.

From a religious standpoint, antibiotics are not a godsend. But I guess neither is Lyme.

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GiGi
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It seems -

This must still be Full Moon time - the time of month when doctor's phone rings off the hook!
Parasites are dancing and copulating.....
and a friend told me that Mercury is in retrograde.......

Dr.K. told me yesterday "we had the week from hell".........

Do make sure to drive especially careful today........

Take care.

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ping
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Ahodge01 - You'll be okay. Don't let go of the rope. Send word if you need...

[email protected]

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ping
"We are more than containers for Lyme"

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Wisconsin
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I'm reading this all with great fascination. I'm sorry to say we've been on and off this board for 7 years.

I can say that over the years I've noticed shifts in general consensus. When we began here it was very unpopular to talk about treating with anything other than antibiotics.

Now I've noticed more people recommending treatments that seem broader.

Our 13 year old son has been treated by an LLMD with antibiotics for years. He can't seem to stay well.

He's also been treated by a LLND...he still can't seem to stay well.

We're going to see Doctor J. Next week. I hope he can help.

I'm scanning all the posts regularly trying to learn as much as I can to help my son. It's sort of jarring when you run into something harsh aimed at another poster.

I know I can learn so much from other people's experiences and it just seems like it isn't in anyone's best interest to make things personal.

I don't know though...maybe other people get a kick out of that sort of dialogue. Just my opinion.

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LightAtTheEnd
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"I don't understand. Zits don;t kill you, neither do UTI's as far as I know or prostatitis. Lyme does."

I recently met someone who is on a permanent prescription of doxycycline for the rest of her life, for rosacea (200mg/day). As far as I understand it, rosacea gives you red spots on your face, and at its worst may give you an ugly, bulbous nose (which she doesn't have), but is not medically dangerous. The cause is unknown, and there is no cure (which makes me wonder why they use antibiotics for it at all).

So for harmless cosmetic conditions that may or may not be due to bacteria, apparently no one raises their eyebrows at permanent antibiotic use. But for the life-ruining, life-threatening bacterial condition of Lyme & coinfections, suddenly antibiotics are considered too dangerous. That is due to the political issues surrounding Lyme, not to science.

I do think all drugs are bad in the sense that they all tax your body in some kind of negative way, and we did not evolve in nature to have these chemicals in our bodies. They also allow the possibility that some bacteria in your body may evolve to become drug resistant. Antibiotics can kill off your good gut flora and cause opportunistic infections. However, many drugs have a major beneficial and healing effect that far outweighs the negative, or the negative effects can be balanced with diet, supplements, and a healthy lifestyle, so that they are worth it.

I would be far less willing to risk the potential damage of any long term drug on a minor cosmetic condition than an a disabling, progressive, and life threatening illness such as the one I have (Lyme).

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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ott70
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quote:
Originally posted by MariaA:
As for the "beating lyme disease" quotes:

If toxins are the cause of most symptoms, how come no one's been able to figure out what they are, and how come simple tests of immmune system inflammation, such as CRP and tests for certain cytokines (the latter in medical studies, not done routinely for us) show that THOSE are what's elevated in sick patients? We know that certain cytokines cause the symptoms of flu and of some inflammatory conditions. I don't think toxins cause elevated cytokine cascades.

Active infection with a variety of pathogens, along with a screwed-up immune system, does cause symptoms due to immune activity such as out-of-control cytokine cascades and other forms of inflammation.

I believe it's widely accepted that the toxins are what causes the symptoms, at least on how I interpret things. How come a lot of things about Lyme haven't been figured out? I dunno as the rest of us don't.

Lyme is a bacteria/parasite, correct? Survival of the parasite depends on survial of the host. The parasite's goal is not to kill our bodies, although it might, so I think it's reasonable to think that the parasite/bacteria is not directly causing the symptoms but rather the toxins they leave behind.

I believe the toxins have been attributed as ammonia by a number of docs. Is there a good test for this toxin? Not that I know of and not one I have ever tested for.

Aren't the CRP and cytokine tests just blood tests? We all know how reliable blood tests are, especially when we visit our PCP who just roll their eyes at us. Most of our toxins are going to be in our organs or muscles or joints and an inflammatory blood test isn't going to show that.

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ping
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ott, as far as I know, it is not widely accepted that toxins are the cause of the symptoms, but they certainly do contribute to illness.

So many claims of ignorance by those in medicine. (Oh, you reminded me, I have to post the Frontline link in Gen Sup., or maybe Off Topic.)

Have a great weekend.

--------------------
ping
"We are more than containers for Lyme"

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massman
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Ping - do you respect Dr. K's work with lyme that states that toxins cause many / most symptoms ?

Is his experience with thousands of patients to be dismissed ?

Are you internet educated only (maybe a little personal experience) or have you worked with thousands of patients as Dr. K has to get your "take" on these matters ?

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lyme in Putnam
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However you do it or did it, it depends on the person. Whatever works for who. Know what you're supposed to do and do it. If it works, it was meant for you, if it doesn't, wasnt't the way to go.

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He took u to it, He'll you through

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gwb
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quote:
Originally posted by Wisconsin:

I'm scanning all the posts regularly trying to learn as much as I can to help my son. It's sort of jarring when you run into something harsh aimed at another poster.

I know I can learn so much from other people's experiences and it just seems like it isn't in anyone's best interest to make things personal.

I don't know though...maybe other people get a kick out of that sort of dialogue. Just my opinion.

Wisconsin,

Sorry for erasing the top part of your post, but what you said is worth repeating. I love learning about the various ways people are being treated with this disease. For five years I've been coming to this forum, and other lyme forums, to read and learn all I can about the various treatment protocols that people are using to get better. That's how I found out about the Jernigan protocol which I believe saved my life.

To put others down, and insult them for views that might be contrary to their own, that makes no sense and serves no purpose whatsoever. Thank you for saying what needed to be said.

Gary

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ping
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quote:
Originally posted by lyme in Putnam:
However you do it or did it, it depends on the person. Whatever works for who. Know what you're supposed to do and do it. If it works, it was meant for you, if it doesn't, wasnt't the way to go.

Yes.

--------------------
ping
"We are more than containers for Lyme"

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ott70
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quote:
Originally posted by gwb:
I love learning about the various ways people are being treated with this disease.

Amen to that, Gary. All I ultimately care about is all of us get better regardless of what course of treatment is decided upon.

I like the various treatments also, although it jostles my mind a little too much and makes me question which way I should be going!

I even take something like the Marshall Protocol into account, that maybe it has some validity to it, but I would never try it myself.

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gwb
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Although, this is a little bit of a long read, it's fitting to this conversation. I thought it would be good to include this link to a blog written by Dr. Jernigan. Be interesting to get people's input and views on what he has to say about this:

http://beatinglymedisease.blogspot.com/2009/06/beating-lyme-disease-is-more-than.html

ott70, thanks for your comments. About the Marshall Protocol, I looked into that one pretty extensively while looking at various protocols. I have to admit, that's one protocol that I just didn't have any good feelings about.

There's some hardcore supporters of this protocol out there, but you'll notice they're mostly on the Marshall website and not here on lymenet or other lyme forums. I agree, if you did go that route, don't do it alone! That's a scary one for me!

Gary

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farraday
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At the CALDA conference we heard from five different LLMD's. It was interesting to hear their different perspectives on lyme disease treatment. I was not able to follow all the details, but I came away feeling that "there is more than one way to skin a cat".

The last speaker spoke mostly about inflammation and how it was responsible for our many ills. Getting it under control was the trick. She listed many ideas for doing that....other than using antibiotics.

My doctor, who was one of the speakers, told me that Dr. B's ideas were on track, but too drastic for me. He did not want me to experience serious herx reactions and suggested we proceed slowly and carefully. I am impatient, but seeing progress and not having serious herxes.

In my cloudly mind, the idea of careful use of antibiotics coupled with sensible body support through supplements, diet, sleep and pain control makes sense. I use homeopathics when I can, herbs when I can afford them.

I have struggled with yeast infection for many years and do agree that it is the devil to get rid of. But I no longer have IBS, rashes and other strong symptoms of it and work daily to keep it at bay!

Thanks for all the great posts. I learned a lot by reading them!

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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daisyrlb
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Excerpts from my recent post on gwb's Hansa Center thread:

I remember saying, after seeing the way Gary has improved on Dr. J's protocol (Dr. J, KS) IF I ever needed to be treated for Lyme Disease I'd never go the ABX route again as I was "sicker than a dog"; and even worse, I believe ABX has greatly compromised my immune system (and I have lab tests to prove it). Little did I know that I'd have to make that "IF I ever" decision anytime soon...

Bottom line, I'm in the early part of a relapse...

I've made my choice to follow Dr. J's protocol, instead of ABX, and have total peace. I believe following Dr. J's protocol, I will not become "sicker than a dog" (like I was the last two times on ABX). Best of all, the integrity of my body will not be further compromised and/or destroyed but, instead, it will be built back up.

One other thing regarding my decision not to take ABX, all I have to do is read the Lyme boards of all the people who have been taking ABX for 5 years (like Gary, not getting better and actually getting worse) or 10 years, or 20 years, or 30 years, and know THAT is not the route for me this THIRD time...

Following is the link to the entire post (scroll to 02 May, 2010 10:34 PM)

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89968/3

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