Topic: Isn't it very dangerous to be on long term abx? I was reading
BackinStOlaf
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Member # 23725
posted
that you can have bone marrow damage, liver damage, and develop strains of resistant bacteria. So if you get some other kind of illness in the future, your body will not respond to abx. I'm scared :/
-------------------- 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
Posts: 1121 | From New York, New York | Registered: Dec 2009
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sparkle7
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Yes - this is why I stopped after 9 months.
The abx didn't seem to help in my case. It's kind of funny how in Lyme-world "alternative" means taking alot of drugs...
I don't advocate that people do what I do but they just weren't helping me. I found that there are alot of alternatives to abx...
Also, the side effects of abx are the same as the symptoms of Lyme & co-infections.
I felt that if we have to treat this for a long time, I might as well use something that was less harmful to the body. I wouldn't mind doing a short course of abx - I just don't like the idea of using them for a long period of time.
So many people relapse...
This is just my opinion.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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canefan17
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I for one am not worried about "other kinds of illness in the future."
My future is now. I'm worried about Lyme.
Liver Damage? Ehhh the liver is an amazing organ. Has the ability to be beaten down and get back up again.
Good LLMD will stay on top of your liver enzymes.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
I think that everyone needs to take the risks seriously. Look at the cost vs. the benefit of using the abx. Typically, it seems the quality of life of a typical Lyme patient justifies the use of abx.
Each person needs to make that decision independently.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you don't treat lyme, you won't have a future to worry about.
There are also many ways to help support the body during treatment. Most LLMDs insist on a multi-level support system and demand excellent self-care. This all matters tremendously in helping treatment both work and be as safe as possible.
There are also other avenues that one can take but ignoring the spirochete is not an option if you want a life.
Do you have a good LLMD yet?
What books or authors' works have you read? Do you need more information? If so, consider all below as you consider your options. If not, just pass it on by.
===========================
Lyme's toxin has similar properties to one of the most toxic infections known to man - botulism. Botulism can be deadly faster than lyme but lyme can also be fatal if not treated.
From the Townsend Letter for Doctors & Patients, February/March 2006
BIOCHEMISTRY OF LYME DISEASE: BORRELIA BURGDORFERI SPIROCHETE / CYST
by Prof. Robert W. Bradford and Henry W. Allen
Excerpt:
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). . . .
- full article at link (with a note of caution about the mention of bismuth. While this is an excellent article for so many reasons, it it important to not that some bismuth treatments can be dangerous, even fatal. Still, this articles holds so much good detail that it is valuable to your library - with this note of caution.)
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" - 2007
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
Keebler: I have a llmd that was recommended to me on this site. Dr. M in nyc.. I have read lots of information including Dr. B's guidelines. I just got my positive igenex test Friday so I am still sorting through all my thoughts. It's very hard.
-------------------- 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
Posts: 1121 | From New York, New York | Registered: Dec 2009
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Haley
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Member # 22008
posted
Antibiotics can do damage to your body. For me it's worth the risk.
Living with Lyme is really not living. If people can treat with natural methods and feel better I am truly happy for them.
I have to have abx to have any sort of sanity. Having said that, I also treat my body with more respect than I ever have. I exercise and eat highly nutritious foods.
If you have a good LLMD you should find your way back to health with minimal to no damage.
Posts: 2232 | From USA | Registered: Aug 2009
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Vermont_Lymie
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Long-term abx saved my life from serious disability and disease. Fortunately, my liver is fine, bone marrow and blood readings are fine, and my health has returned from use of antibiotics.
There are many different types of abx, and they can act on your body differently. Haley above says it well, if you have a good llmd you should be able to have effective treatment with minimal or no damage.
Posts: 2557 | From home | Registered: Aug 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BackinStOlaf ,
I am glad to hear you have a good LLMD and so sorry about the test - but you have information and a good doctor you can assess your clinical status . . . so since I'm pretty much action oriented, I just go for solutions.
Just remember that very specific LIVER support and ADRENAL support are both absolutely essential elements to any treatment you choose. Avoiding as many other pharmaceuticals as possible (and even most OTC pain meds) is also important to help your liver and your kidneys.
Some abx can be very hard on the ears, even toxic to the ears. Some people do better than others but even with those more prone to ear problems, LIVER support can also help protect your ears. As well, if one kind of abx causes problems, there are other choices.
Being gluten-free is also extremely important to success for many reasons too numerous to detail here. If applicable, treating heavy metals, too, is vital.
Many have succeeded but no path is easy and nothing works for everyone all time (especially as coinfections vary). It's all an art, for sure, as much as a science.
Good luck.
==================
Here's more more note from a CAP (combined antibiotic protocol) tx for Cpn, a similar treatment to that of chronic lyme:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
. . .
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
. . . more at link above.-
======================
3/4 of the way down page one - many links to LIVER support options:
Topic: NATURAL SLEEP - Links to articles & supplements
-
[ 02-07-2010, 10:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To BackinStO,
With a good lyme doc, you are not going to get liver damage. They test your liver frequently throughout the treatment. To not do so would be to open themselves up to an easy malpractice suit. If your liver enzymes begin to elevate, they know what to do. If need be, you stop treatment before you ever get into the danger zone. So, no need to worry. A lyme doc is on top of the liver at all times.
I have never heard of any lyme patient getting bone marrow damage either, and I have been around here for quite a few years--at least 7, talking with many, many lymies on line and in person and on the phone. People call me from all over. If you want to explain how that damage supposedly occurs, I will tell you what I know about it.
Regarding developing strains of resistant bacteria so that if you get some other kind of illness in the future, your body will not respond to antibiotics, I will tell you what my lyme doctor said about that.
He said that the only time a person has to worry about the body not responding to antibiotics is if they contract a disease in the future that has only one antibiotic that can treat it. If anyone (not just lyme patients) has that case, there could be a problem. However, the meds used to treat lyme and coinfections are common meds and do not include any meds that are the exclusive cure for any particular disease. So, the scenario being described will never happen as a result of lyme and coinfection treatment with long-term antibiotics.
I don't know if you realize it or not, but there are doctors who are trying to scare patients into not taking long-term antibiotic therapy for lyme disease. They have really taken a stand against our lyme doctors' way of treating us and they are waging an all-out war against them using every means possible.
Perhaps that is where this talk comes from. I have absolutely no fear of any such thing. I discussed it with my doc. I suggest you discuss it with your lyme doc also.
When I had lyme disease, life was unbearable. There were days when I would have shot myself if a gun were available. I suffered terribly for 5 years. A person can only take so much pain and suffering before wanting to end it.
Now, it has been nearly 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life--the same life I had before lyme disease.
I am very healthy for my age and rarely get sick. I have no serious medical conditions. I don't take any meds on a regular basis except hormone replacement. I have had no negative effects from my over 3 years of continuously taking antibiotics. Neither have any of my friends who also got rid of their lyme disease.
As Burrascano points out in his guidelines, long-term antibiotics are used to treat many illnesses including tuberculosis, rheumatic fever, and acne. (Kids are on antibiotics for acne for years. Huh?) I myself took antibiotics for rheumatic fever from second grade until ninth grade. It was continuously for a few years. Then, as needed after that. Nobody thought anything dangerous was being done to me.
To quote Burrascano:
"Remember, years of experience with chronic antibiotic therapy in other conditions, including rheumatic fever, acne, gingivitis, recurrent otitis, recurrent cystitis, COPD, bronchiectasis, and others have not revealed any consistent dire consequences as a result of such medication use. Indeed, the very real consequences of untreated, chronic persistent infection by B. burgdorferi can be far worse than the potential consequences of this treatment." (p.22, Guidelines)
Just want to say there is another side to what you have read and it makes very good sense. I think you will decide to discard what you have read if you look into the truth about lyme disease treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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sparkle7
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posted
Some people have lost their gall bladders due to abx. Some have also gotten very difficult intestinal issues.
I was ill for over 9 years. I didn't have any money left after I went to the Fibromyalgia & Fatigue Center for lots of LLMDs, tests, drugs, etc.
So, in my case, the herbs made more sense. If you catch it early & have money for doctors & tests - it may be a worthwhile way to go to use drugs.
I didn't want to stop & start abx treatment due to severe side effects & lack of funds to keep trying new ones. It got to a point where my side effects became worse than the illness.
Like I said, I don't advocate that people do what I do. There are alot of people who have had severe side effects from long term abx usage. You do have to be cautious.
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sutherngrl
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Member # 16270
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I feel that the benefit out weighs the risk. I can't worry about illnesses that may or may not come down the road. I am ill NOW.
Everyone has to travel their own journey of treatment and recovery. My personal opinion is that a bacterial infection has to be addressed with antibiotics.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I forgot to mention not only the importance of Probiotics but also OLE (Olive Leaf Extract) to help keep candida from even developing in the first place. Very important to prevent candida if possible. OLE was a miracle for me. Wish I had known of it many years ago.
quote:Originally posted by Vermont_Lymie: Long-term abx saved my life from serious disability and disease. Fortunately, my liver is fine, bone marrow and blood readings are fine, and my health has returned from use of antibiotics.
Ditto for me. I was on abx for 4 yrs straight and never once had high liver enzymes.
Life with Lyme is NOT one you want. It only gets worse with time.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Amanda
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posted
Its good to make the distinction between oral abx and IV abx.
Long term Iv abx (more than 6 months) do carry risks.
But I ahve to tell you after five years of absolute misery, I wish to hell I could afford IV. I would rather be dead than go on like this.
Lyme can damage your body a lot more seriously than oral abx. IT can cause permanent damage to your heart, or nervous system. The key is to have a good doctor who has experience with treating long term abx.
It is true that some people seem to be much more tolerant of abx than others. The key is to carefully monitor your progress to find out how you, persoanlly, will tolerate them. You and your LLMD will need to track progress and side effects carefully. For my part, the amount of orals I have taken over the last three years is astonding , and I have not even had a yeast infection (unfortunateily for me, I really need the IV to get over the hump, and I can't afford it). I try to go off the orals, and I tank fast. Although not enough to actually kill me. I am sorry to sound so "soom and gloom", but it is excurraitingly painful disease for me, and it could have been avoided if I had been more aggressive in treating it up front. I was initally resistant to teh idea of lyme...
There are many examples of other people with other diseases (COPD, AIDS, TB, arthritis etc) that take oral abx long term (several years), and there is almost no track record of problems with those patients.
You'll need to do research on different drugs. Some drugs are hard on the liver (ketek, for example). Some are harder on your kidneys (ceftin for example). Some drugs are processed in your large intestine and are much easier on your organx systems (like doxycyline), but they can cause problems for your colon.
And then of course, you have to keep in mind that everyone responds differently, and what might work best might be hard on your liver.
Anyway, just my thoughts, talk to your do...
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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lymebytes
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Most who get well (and were really, really sick) got well sticking to long term tx w/abx. Including my 20 yr old son, (who is now off all abx) healthy and strong as ever since treating w/long term abx.
If you are sick w/a disease whether it be diabetes, high blood pressure, etc., it needs to be treated and every drug has risks, walking across the street is a risk too. Truly, everything is a risk.
Lyme is a destroyer. The risk of abx IMO doesn't even compare.
Lyme can cause liver damage, heart damage, brain lesions, nerve damage and on and on and on.
It is up to each of us to decide for ourselves how to treat...but make sure to really study Borrelia burgdorferi bacteria and its virulence, totally understand what you are up against.
This is quote is food for thought from the Georgia LD Assoc. regarding Borrelia burgdorferi:".....touted as one of the most complex organisms ever to be studied by man".
I have been on abx long term, no damage from the abx has occured, liver is fine, etc.
"Progress always involves risks. You can't steal second base and keep your foot on first." ~ Frederick B. Wilcox
posted
You will not recover without antibiotics. Listen to your LLMD.
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seekhelp
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Member # 15067
posted
Massman, please tell me more. I'm very interested.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I do not think that just because one has no pain that you necessarily have a good liver. I think it can cut both ways.
I do think the numbers important, but like you said, your liver might be messed up with the numbers being in the acceptable range or vice versa.
The doctors should test us frequently to make sure our liver numbers are acceptable. Of course if someone is having pain they should report it and possibly do an ultra sound etc....
I have not had liver pain, but have had elevated numbers and my ultra sound came back okay. I think we just need to watch things.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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sparkle7
Frequent Contributor (5K+ posts)
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posted
Re: You will not recover without antibiotics.
-----
In my mind, this is inaccurate. There are alternatives-
Healing lyme? with Stephen Harrod Buhner, master herbalist
Dear Stephen,
Your book is called Healing Lyme. Does this mean you can be completely healed of chronic lyme from your protocol?
I have been very ill and bedridden for almost 2 years with no help from antibiotics. I have recently started looking into and trying herbs and also a raw food diet with juicing.
I have started to feel better after 2 years of 24/7 suffering and ready to give up. BUT I am on a mission to completely heal that is my ultimate goal and I will not give up until I reach that goal.
So, can you HEAL lyme with your protocol or does it just suppress symptoms? I have read of people becoming symptomatic again after stopping your protocol. Thank you!
Stephen's response:
From what I have seen over the past years about 70-80% of people clear it completely using the protocol, 10-20% continue to need some sort of supportive protocol, that is, the symptoms are gone while on it but return to some extent if it is discontinued completely, and about 5-10% don't respond to the protocol.
______
In my experience, the herbal remedies I have tried have been just as strong as abx. I herxed tremendously from Nutramedix Quina & Cumanda - if that's any indication that something is working. There are other herbal supplements that made me herx alot.
I'm not in the mind set to argue but there are alternatives to the drugs.
The main thing is knowing what you are treating. If the tests are barely accurate & there are pathogens that probably haven't even been discovered yet - how do we know what to treat.
The liver is one organ in the body. There are other places in the body that can be effected by drug related side effects.
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