posted
A number of friends have sent me notices about a recent report that appeared in the journal Neurology, supposedly concluding that long term use of antibiotics for "Post Lyme Disease Syndrome" is ineffective and dangerous. I spoke with a pharmacologist friend (professor) who explained how bacterial infections can result in long term symptoms due to the anti-inflammatory or inflammatory response from the body's fighting the disease. She said all the symptoms I manifest currently could fall under that explanation. I've been on abx for a year (started them within two weeks of the tick bite), and I assume that most of you on this list have been on them a lot longer. I'm starting to get cold feet about the abx treatment, and am looking for opinions about this latest study now in the arsenal of naysayers. I have worked with an herbalist from the start, too, who has recommended thus far that I stay on the abx. Any comments? Thanks!
Posts: 40 | From Cincinnati, Ohio | Registered: Sep 2006
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sixgoofykids
Honored Contributor (10K+ posts)
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posted
My feeling is that I'd rather take the known risk of abx than the unknown risk of untreated Lyme Disease.
My life was hardly worth living (except for hubby and kids of course) prior to treatment. I get a little better each month. If what they told you was true, I would not be seeing progress.
My LLMD is a holistic doctor and has me on all kinds of supplements to go along with the abx so that I'm building my immune system.
I'm in Cincy, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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RoadRunner
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posted
well if you detox and do all the right things(supplements, eat healthy etc.) you should be fine. they give abx for acne for years so this is just crazy stuff.
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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Greatcod
Unregistered
posted
The information in Neurology is biased and flawed and fails to take a great deal into account. They left out or trivialized the success that many have had with long term ABX. The reality that many people herx on ABX treatment counters the notion that all the ABX do is reduce the inflamatory response, which is what your friend is referring to. The devil is in the details.
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posted
Well, I think that as long as the infection remains, there is the potential for inflammation and thus why antibiotics are necessary. There are many Lyme patients who do well on long term antibiotics, but as soon as they stop taking them, their symptoms return. If the infection is gone, why would the inflammation return after stopping antibiotics? Are there any other bacterial infections that once eradicated continues to cause an inflammatory process long term?
Christina
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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Geneal
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posted
I also feel that most researchers neglect the complexity of this disease.
Let me know when they do a study involving Lyme and multiple co-infections as well.
If Lyme were that easy to erradicate, we would all be well.
Is it just an inflammatory response? Maybe lasting infection creating that inflammatory response.....
If I have to stay on antibiotics for the rest of my life to have quality of life, then I am all for it.
We don't have many alternatives for beating this thing down.... yet....
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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With regard to the issue of inflammation post infection, I gather that does happen with other bacterial infections, at least according to my pharmacology professor friend.
I spoke with someone else last night who recently stopped taking the abx after a long time. Her symptoms were much improved but not completely gone.... having reached a plateau. She said she has felt much better after stopping the abx, that she believes her body was feeling worse from the toxicity of abx. But she is now treating her Lyme with (and strongly recommends to others) an herb called Artemisia (recommended by the World Health Organization for bacterial infections such as malaria), lots of raw garlic, mega doses of Vitamin C, and an antioxidant remedy called Mangosten.
She said her doctor(s) say that once the body has been clear of the massive quantities of bacteria through abx, it is better to let one's own (strong) immune system take over to deal with the rest. Thus doing everything possible to build the immune system and heal from the down side of abx. This made a lot of sense to me.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I know that the action of some antibiotics is also anti-inflammatory, but if that was the only action that we were benefitting from (and not the killing of actual bacteria) why wouldn't Ibuprofen or Aspirin work just as well as they are anti-inflammatories?
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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quote:Originally posted by dontlikeliver: I know that the action of some antibiotics is also anti-inflammatory, but if that was the only action that we were benefitting from (and not the killing of actual bacteria) why wouldn't Ibuprofen or Aspirin work just as well as they are anti-inflammatories?
DLL
Yes, and why do some of us have initial herxes with increased inflammation on "anti-inflammatory" abx like doxycycline and tetracycline, before inflammation resolves and symptoms improve?
Posts: 621 | From US | Registered: Jun 2006
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Aniek
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posted
The article was written by many of the same authors as the IDSA guidelines. It is not a new study, it is evaluating past research.
The studies they usually reference (I didn't read this article, just glanced at it) are flawed. The big danger they point to is gall bladder disease because one study showed a correlation between gall bladder disease and IV Rocephin.
This does not apply to all abx, and there are ways to protect the gallbladder while on Rocephin, like taking Actigall.
The one study that supposedly shows long term abx did not work looked at only 3 months and included patients who had multiple past treatment failures. It was a very bad study group. They also look at only one abx combination and then assumed the results would apply to all abx.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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TerryK
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posted
One more thing to add to what Aniek said about the long term abx studies is that if they did not check for or treat babesia, a percentage of people will have babesia and won't show improvement until babesia is under control. If they were already treatment failures there could be many with babesia and this would drastically change the results of the study.
We need our own, smart and well informed doctors conducting some of this research. I'd really like to know if Dr. F's study took co-infections into consideration.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I say if people feel much better not being on antibiotics, then they probably shouldn't be on them.
Granted they could be experiencing a herx. But they shouldn't be herxing on a continuous basis.
If that's the case, then maybe they're having an allergic rxn.
It's all so individual when it comes to Lyme disease.
That's why more studies need to be done to understand the pathology of Lyme.
So, if you haven't already, please call or write your Representative to support H.R. 741 (The Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2007).
Go to the link below to see a sample letter and to learn more about this bill.
Also, there's a link at that site that will tell you who your Representative is.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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posted
I was on IV for one year, taking about seven seperate ones until they ended with Zithromax. Along with that, I took flagel which made me hallucinate. the entire year, I thought I was dying, but the nurses and nurse practioners told me I was herxing and the Lyme was dying off. I went from IV to oral abx, and I slept for about months. I could't wake up, and it was as if I was in a partial coma. My LLMD finally met with me and said I probably was toxic from the ABX.
I'd like to know how many people on this post are doctors. I come here for advice about other side effects or how others feel, however, I get very turned off by this group when everyone seems so righteous about their own answer to treating lyme. All of us are different and react to medications differently.
I cannot believe that the woman who started this post knew she was bitten and has been on antibiotics for a whole year! Six weeks should have been sufficient. How many people are retested and know whether or not they still have Lyme? Before I took any advice on whether or not to continue abx, I would want to know whether or not I still had it.
I can tell you that from my experience, I feel much, much worse on abx than off, and I am quite ill like the rest of you.... so let's try to be a little more tolerant of other's studies who actually have degrees in medicine. I'm a pianist, but I wouldn't hire a refrigerator repairman to tune my piano, and I wouldn't ask my neighbor how much abx I should be on and when I get cancer, I won't go to her to find out if I should get radiation or not. Get my point??
Posts: 75 | From NC | Registered: Dec 2004
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Geneal
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posted
Forgive me if I am wrong, but wasn't there a post a couple of weeks ago re: this article.
Seems that a couple of the board members for the Neurology group are also on the IDSA board as well.
Does anybody else see the connection???
Prior to Lyme, other than my C-Sections, had not been on antibiotics for over 5 years.
That my body's immune response did not step in and "handle" this disease is telling in itself.
Let's see. No antibiotic treatment....certainly a downwards
Spiral to dementia, heart issues, and ultimately death.(Not to mention the PAIN!)
Antibiotic treatment....altering the body's immune system (hopefully helping),
But giving quality of life back.
I can say I have happily been on antibiotics since last October and am doing better than I was then.
I am not cured or in remission by any means, but am able to function much better.
Definitely worth the risk to me.
In addition, long term antibx. therapy may be my children's opportunity to beat Lyme.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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dmc
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Member # 5102
Bethesda, MD (PRWEB) June 15, 2007 -- The International Lyme and Associated Diseases Society (ILADS) today announced that, for the first time, evidence supporting the ILADS position on the treatment of Lyme disease has been published in the journal Clinical Infectious Diseases (CID), considered one of the most prestigious publications in the field of infectious diseases and microbiology. It is the first time that evidence supporting the ILADS position has ever been published in an American infectious disease journal.
The duration of treatment for Lyme disease has been a contentious issue among physicians. The fact that two major medical associations - the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) - have released conflicting guidelines for the diagnosis and treatment of Lyme disease has fueled the controversy.
"Publication of our recommendations about the most effective treatment for Lyme disease in a journal like CID is a milestone for ILADS," said Dr. Raphael Stricker, president of ILADS. "Doctors, patients and insurance companies need to know that the IDSA guidelines are flawed."
Difficult to Diagnose A primary factor in the Lyme disease controversy is that the disease can be difficult to diagnose. Not every patient suffers from the typical "bull's-eye" rash and joint inflammation, considered classic symptoms of Lyme disease that is transmitted by the bite of a tiny tick. ILADS research indicates that only 50%-60% of patients typically recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. And given the prevalence of over-the-counter anti-inflammatory medication such as Ibuprofen, the joint inflammation is often masked.
Many patients with Lyme disease will continue to experience a variety of symptoms, even after the treatment recommended by IDSA. Some of these patients go on to develop multiple nonspecific symptoms, making it very difficult to diagnose chronic Lyme disease.
One reason for this difficulty is that Borrelia burgdorferi, the corkscrew-shaped bacteria that causes the disease, has an unusual genetic makeup. This allows the bacteria to screw its way into a variety of cells and evade the body's immune system. According to ILADS research, the Lyme bacteria invades multiple tissues and is able to assume a dormant state much like tuberculosis. This can make treatment much more difficult.
Extended Therapy Based on extensive clinical evidence, ILADS maintains that extended antibiotic therapy for Lyme disease is sometimes necessary, particularly in later disease that is more difficult to eradicate. Studies have shown that Borrelia burgdorferi can persist after antibiotic treatment. In particular, studies conducted in animals - including mice, dogs and monkeys - indicate that the corkscrew-shaped bacteria can persist after treatment is completed. Persistence in humans has been confirmed by culture or molecular testing in at least a dozen studies.
"Science in this area is still evolving," according to Stricker. "We don't have all the answers and it is too early to adopt treatment strategies that assume we do. Meanwhile, doctors need flexible treatment approaches," he said.
The article describing the ILADS position on treatment of Lyme disease will be published in the July 15 issue of Clinical Infectious Diseases.
About ILADS ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the diagnosis and appropriate treatment of Lyme disease and associated tick-borne infections. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for tick-borne diseases.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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RoadRunner
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posted
Dmc nice post
If you think lyme test are good you are kidding yourself, maybe 30 percent accurate
If you believe idsa group then you should go to one of there doctors And see if you get better.
You don't need to be doctor to know if you are getting better.... On this board it is living experiences.
I am better from long term abx and they do work but not for all.
Just like in cancer patient treatment sometimes doesn't work and doesn't mean not to try different treatment.
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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regarding the gallbladder disease. My LLMD told me that Borrelia often attacks the gallbladder and causes it to be diseased.
So, if you have Lyme, your gallbladder may already be starting to fail. Taking abx is an extra burden onthe gallbladder, but it might not be the sole reason for it to fail. It's probably a combination of both Lyme and abx.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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hardynaka
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Member # 8099
posted
PAM,
I'm very much like your friend, I can't tolerate much of abx because of GI problems, but tolerate herbs much better. I had gastritis before and diarrheas before lyme, so I'm terrified about most abx. It doesn't mean that you can short cut treatment with herbs, it still takes a long time.
No treatment means going downwards, like other posts said.
I'm with artemisia annua now, and have been on and off this herb plus MANY others during the past 2 years. I feel much better when I'm not on abx (but I haven't taken more than 2 months abx in total to say much about it) but I certainly need herbal 'killers', immunomodulators and cleansers.
I am also a total believer that if our immune system doesn't do great part of the job, these infections will never be hit. Immunomodulation is important in my view.
Take a look at Buhner's protocol posts here. Many are on herbs only (or on combo herbs + abx), the treatment is much more complicated while in herbs ONLY because we need a bigger amount of combinations of herbs, but at least, it saves my GI from candida (another tough infection to treat) and makes me feel better in general.
I do herx loads with herbs. Artemisia annua being a tough herb by itself. Today I literally fell down on my carpet, so tired I got after my main dose of 'killers' from the morning. I'm also on lots of garlic.
The decision is always yours. There are many different views on how to treat lyme in this board, just do searches, you'll see there are no single golden bullets.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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luvs2ride
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posted
Ok guys. Devil's advocate here.
I do not stand with IDSA that 6 weeks of antibiotics clears lyme and any remaining symptoms are just an inflamatory response.
I agree that lyme testing is pathically inaccurate.
However, antibiotics are not without hazards of their own and the dangers are very real. The example of drugs for acne are not a parallel comparison to lyme drugs as the acne drugs are low dose, well established, safe drugs with a long history.
If all we took were doxy or minocycline or tetracycline, then the biggest worry we would have is a yeast overgrowth.
Everyone should be well informed about the potential risks so they can make a knowledgeable choice of treatment.
ALL Treatment of lyme disease is experimental and the longterm effects are not yet known.
That fact should not and cannot be ignored.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Yeast overgrowth can become quite serious and even cause death in some cases.
If you are taking antibiotics, please watch your diet carefully with no sugars and also be sure to take probiotics. You may also need some anti-fungals. Yeast is opportunistic and can change from spore form to hyphae form which is extremely aggressive. Basically, this should not turn into the hyphae until we are deceased, but if our immune system is unbalanced, we will suffer the consequences.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
Can you tell me what long treatment abx hazards are?? acne drugs people get the same dose as with lyme.
I would rather deal with the long term abx effect then lyme disease any day.
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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bejoy
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posted
To sum up what I believe I have learned thus far:
Few people report getting well from lyme without longterm antibiotics, although I believe it is possible some cases.
Many people report regaining health by following ILADS abx guidelines.
Antibiotics are not without risk.
ABX risks include possible splean problems other toxicity issues, and candida overgrowth,
which can lead to other serious chronic health problems, including inflammation that may mimic lyme.
My impression is that most people who get well from lyme and stay well report using longterm
antibiotics along with careful attention to detoxifying, candida cleanse, and strengthening
their immune system with some type of herbal and/ or supplement support.
I believe there are several kinds of medical research:
some is meant to inform us towards health, and some has a financial and power agenda.
I tend to distrust IDSA research because it comes from flawed assumptions about the disease,
whether because the writers are ignorant, or because they are lobbying to protect the short
term interests of insurance companies, or to protect their status as "top professionals."
RR - I believe I have read on this forum that acne treatment is often a similar length of time, half the dosage reccomended for lyme.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
ABX risks include possible spleen problems other toxicity issues, and candida overgrowth,
you dont need a spleen to live....
I will take these risk over lyme disease any day....
I know people that got the same dose as lyme with acne....
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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luvs2ride
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posted
Correction Roadrunner,
If you have babesia and you lose your spleen you die. They can't save you.
You do need your spleen and your gallbladder and your liver and your eyes. They all play a role in our health.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
You can live with no spleen my best friend had his out and is living fine for 30 years now.
you better use google before you correct me.
it just is amazing here....
thanks cave
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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RoadRunner
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Member # 380
The absence of a spleen predisposes to some septicaemia infections. Vaccination and antibiotic measures are discussed under asplenia.
* Some people congenitally completely lack a spleen, although this is rare.
* Sickle-cell disease can cause a functional asplenia (or autosplenectomy) by causing infarctions of the spleen during repeated sickle-cell crises.
* It may be removed surgically (known as a splenectomy), and indeed often is. For example, it may be removed following abdominal injuries with rupture and hemorrhage of the spleen, or in the treatment of certain blood diseases (Idiopathic thrombocytopenic purpura, hereditary spherocytosis, etc.), certain forms of lymphoma or for the removal of splenic tumours or cysts.
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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Do you happen to have the link to the article mentioned? I'd be very curious to read it.
One thing that has somewhat allayed my fears re: intense antibiotic treatment is that my LLMD orders lab tests every other week to make sure my liver and kidney are functioning fine. I'm not sure if this is standard, but I appreciate this cautious approach.
Of course, I have only been treated for 10 days, so I have no idea how I will feel about this issue in a few months if my symptoms still do not improve...
Posts: 390 | From Oakland, CA | Registered: May 2007
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luvs2ride
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posted
News Flash! I googled Babesia as soon as I was diagnosed. So I didn't just pluck my information from my imagination. See below.
Mortality/Morbidity: * Babesiosis in otherwise healthy hosts produces an acute infectious disease resembling malaria. Fatalities are uncommon in patients with normal splenic function. * Patients who are asplenic have a more fulminant and prolonged clinical course and may have overwhelming infection and a fatal outcome.
This one should be of particular interest since it is from ILADS.
In Europe so far about 30 human diseases have been described, mostly due to the bovine parasite B. divergens. In 1995 Loutan (1) described a case imported into Switzerland. It concerned a splenectomised patient who had probably been infected in Wales. In splenectomised or immunosuppressed patients babesiosis is a life-threatening disease accompanied by high temperature, shivering, headache, extreme muscular pain, acute haemolysis, acute kidney failure and acute respiratory distress syndrome (ARDS). These patients, handled in intensive care units, are mostly treated intravenously with quinine and clindamycin.
One thing I can always count on from a few of you on this board is your total lack of objectivity.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
did these people die?
doesn't sound like it.
you don't need a spleen to live.
did you read the above?
call any hospital or doctor and ask them if you need a spleen to live.... they will tell you no
filtering out foreign organisms that infect your blood removing your old or damaged platelets and red blood cells storing extra blood and releasing it as needed forming some types of white blood cells If I become injured or diseased, I may have to be removed through a medical procedure called a splenectomy. About 1% of the population is spleenless. You can live without me (although important, I am not a vital organ), but your resistance to infection will be lowered, at least initially.
Although I like to think of myself as irreplaceable, eventually some of your other organs like the liver (a real team player), will take over my responsibilities.
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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RoadRunner
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Can I live without a spleen? The spleen is part of the body's complex immune system to fight infections and to survey the body for foreign substances. It plays an important role in early childhood, but an adult can live a normal, healthy life without a spleen. Living without a spleen slightly increases your chance of developing an infection with certain types of bacteria. Patients undergoing splenectomy will receive vaccines to reduce this risk before the operation and periodically afterwards.
again you don't need spleen to live.
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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Truthfinder
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posted
I've had this nagging thought about one aspect of long-term antibiotics that I've never seen discussed here........
Most bacteria exposed to antibiotics for a prolonged period - even the bacteriostatic abx - can cause antibiotic resistant organisms.
So, what happens when a healthy tick bites someone with Lyme who has been on various antibiotics for 4 years? Did the healthy tick then just acquire a harder-to-kill Borrelia infection, which may then be passed to the new offspring and to other humans and animals?
We often talk about what ticks give to US..... well, what about the bugs we may give to THEM, and thus to other potential victims?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Truthfinder
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posted
quote:ALL Treatment of lyme disease is experimental and the longterm effects are not yet known.
That fact should not and cannot be ignored.
Well stated, Luvs.
RR, the language couldn't be more clear about Babs and asplenic patients........'' may have overwhelming infection and a fatal outcome''. `Fatal' pretty much suggests possible death.
Another factor in what we hear about people recovering from Lyme is that the majority of people on this board and in support groups we hear from are following some type of abx protocol. Statistically then, there will be more reports of wellness from those using abx. That's just a fact.
In the past, too many new people interested in primarily alternative Lyme treatments have come to this board and left shortly thereafter due to an overwhelming bias against alternative treatments. Hopefully, that is changing. We will never hear about the successes of unconventional treatment from those who felt the need to seek support elsewhere.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
you wrote may have overwhelming infection and a fatal outcome''. `Fatal' pretty much suggests possible death
keywords may have
again if you read my post you don't need a spleen to live one percent of the population is spleenless. yes 1%
you can also get hit by lightning and hit lotto(may have)
the facts are you don't need a spleen to live these are facts.
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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CaliforniaLyme
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Member # 7136
posted
My recent experience in Wisconsin was that I unlike prior to abx I was the least tick-attacked of all of my family and I attribute that to the wafting of the scent of amoxicillin*)!*)!!
CarlessDave on Lymenet ia asplenic if I remember right AND had Babs!!!!!!!!!!!!! No, you don't automatically DIE, but it is not good either*)! he was fien with Artemeisia right if I remember right (I could be remembering totally wrong but I don't think so!!!)
I KNOW I have HUGE inflammation issues because when I stop abx I swell up first thing- visibly. But abx keep me normal and loving life!!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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LabRat
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Member # 78
posted
Good morning! Reading all these posts is for me like looking in a mirror at my past, at least so far. They don't call me labrat because all I took was asprin! For two or three years I was pretty much in a stupor, on the sofa with both eyes in the same socket! Around me people were being cured with one and two week courses of doxycycline, yet I was making marginal gains on all the hi-powered IV stuff. Started bicilian LA and Tinidazol and got my mind back in a couple of weeks and continually improved over a period of time (years), then seemed to plateau. I thought that maybe this was as good as it got and stopped all abx. Well, that didn't work very well. A long about this time a theory was suggested regarding the ``outer surface protein'' this thing carries on it's back that (as I understand it ) matches something about a quarter of us carry and that is HLA-DR4. The theory was and I don't know if this has changed, was that our immune system thought this bug was us and didn't attack! So we could only count on abx for any help or cure.
Oversimplified of course but I had to accept that there had to be a reason everyone else was getting well and I wasn't!
I began to think containment rather than cure and so far this has worked well for me. I take 100mg of Doxycycline once a day, every day. If I stop and I have from time to time, something bad happens. Double vision, heart fibrillations and severe and crippling arthritics are the ones I'm most aware of and fear most!
Anyone trying this shouldn't expect to see or feel any improvement at all for at least two or three weeks, then you should see fairly rapid improvement, almost on a daily bases till near normal over the next six months. If you stop, thinking you are cured, then the process begins in reverse order, ever so slowly till at some point you realize you're in quicksand again!
I offer this with the hope it may do you some good when and if you're ever ready to try it.
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000
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posted
From someone who has a very close family member who recently lost her spleen. Spleens are important. In the short run, you may do well, however, frequently in the long run, you succumb to infections.
The drs. have repeatedly told my family member to avoid crowds or situations where she may be exposed to anything from colds to other more serious infections.
She got an infection and nearly died. Heavy, massive doses of antibiotics were needed. that probably wouldn't have been the case if she had a normal functioning spleen.
it is best if we have all our parts, KWIM?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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posted
I was interested in reading this for information about damage due to long term use of abx. But I don't see any information, other than what we already know.
I would pick long term abx + probiotics any day for the treatment of severe, chronic lyme. They have given my and my daughter's life back.
Right now I am suffering GI problems, and taking a break, doing a cleanse, and then figure out the next step. After 2.5 years, I do not believe I am done.
I am finding it slightly irritating and sad to read newbie's posts -- newbies who are believing doctors know what they are doing with Lyme.
Thank god there is a publication coming out in CID supporting ILADS use of long term use of abx.
Medicine is very political and research is driven by money and politics. Lyme is off the radar for political and financial reasons, not for scientific reasons.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by NCLymie:
I cannot believe that the woman who started this post knew she was bitten and has been on antibiotics for a whole year! Six weeks should have been sufficient.
NCLymie, it appears you haven't been doing any reading.
Your definitive statement that "six weeks should have been sufficient" ignores dozens of published studies documenting the persistence of the lyme spirochete despite sometimes multiple rounds of antibiotics.
It's worth noting that the IDSA ignores all those studies too!! When called to task as to how to account for them, they weakly claim it must be due to "cross contamination in the lab." Yup -- ALL the labs. ALL the studies! Right.
Here's a good place to start educating yourself on the tenacity of the organism and its ability to survive antibiotics. These are not made up or anecdotal. Recurrence/persistence has been amply documented for a long time -- for over a decade!!
It's a shame we can't all concentrate on what to do about it, rather than pretending it doesn't even exist.
hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
In the Tropical Institute in Belgium, I went to see these professors specialized in infectious diseases. When I told the guys "I think I have babesiosis", the first question they did was:
"Have you removed your spleen?"
They think that ONLY people without a spleen catches babesiosis!! It CAN develop into a serious condition, specially if you get the strain from here.
Besides, you'll also have to change your diet to low fats forever. Or am I wrong? I know two 'healthy' people without spleen, both can't tolerate meat or butter (only at minimum amounts).
Having said that, there are reports of death of many cows with babesiosis here in Switzerland, and they still had their spleen!!!
I have the opposite reasoning: if there seems to be alternatives, which are less harmful, why not go for them?
I also took abx in my early stages infection, on both infections (few weeks), I also gave abx to my daughter after her tick bites 2 times last year (few weeks), but I can't imagine going for the long term now that we both tried herbs.
If I can save my organs, if I can eat 'normally' (not a very strict anti-candida diet), if my symptoms fall down, if I herx and improve, if I don't need to beg abx to ducks here, if I know there's less chance that critters get resistance with herbs than abx, well...
Of course, not every BODY reacts the same to any treatment, any protocol AT ALL.
But I'm glad I have my spleen as I've been bitten only twice here in Europe and both ticks were infected with babesia!
Giving people doxy forever for pimples looks a very 'unreasonable' treatment in my view. If not unreasonable, at least, not a one-fit treatment to everyone.
Just get a person like me that feels terrible stomach cramps after doxy or most abx. Terrible pains followed by diarrhea. Then probably long term, I would develop intestinal candida. I'm already skinny.
If I got pimples, NO WAY doxy would be my treatment of choice. Would I choose eternal gastritis + constant diarrhea + candida risk + losing more weight to pimples? No way!
The last prescription of doxy for my 2nd re-infection was supposedly for 4 weeks.
I could tolerate only 2 weeks, only at 200 mg a day, loaded with foods before intake! My stomach pain was already bigger than my lyme symptoms...
Posts: 1086 | From Switzerland | Registered: Oct 2005
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