I have been reading a lot lately that antibiotics do more harm than good especially long term use.
I know some of you all already know that, but it seems within the past year it's been blasted all over, especially social media.
I continue with ABX, mainly pulse, but am unsure if I should continue.
Afterall, it hasn't done much for me for the last 8 years.
Kinda at a loss...
Posted by Keebler (Member # 12673) on :
- Like the guys at "This Old House" always say:
"The right tools for the right job."
And I also say: "the right doctor for the right job."
So, assess your doctor if you are unsure of your treatment plan. Be sure they up to the task, keep current with all the latest from ILADS - & beyond - so to speak.
So much has to do with the expertise of the LL doctor not just with lyme but all that goes with it, as you know. Biofilm, all the various forms, etc.
You won't see that mentioned in the antibiotic-bashing articles.
Have a talk with your body as to if this seems the right path for you.
As for the media campaign (just as with vaccines):
What you read is, in large part, propaganda along with a heavy dose of reprimanding for the general public to just stop trying to get antibiotics. Part of that is that, true, for some things they just do not work.
But, where lyme is concerned, what you read in the mass market mayhem is just not the problem. The problem - regarding lyme - is that the typical low dose, single Rx approach, short term does not usually work. It's much more complex.
You also never see the media explore why antibiotics, alone, are never supposed to be the treatment for lyme. Also, one reason why they can fail, when other classifications of anti-infective Rx are not used as required to combat.
The pulsing is coming to attention in some articles but it's nothing new to ILADS doctors. The media don't report that. But the pulsing in the media still falls way sort in ignoring the cystic form, etc. with other kinds of Rx.
Yet, for those who do have difficulties with Rx, there are some other approaches. Just keep in mind that the media is doing the pharmaceutical industry's bidding by cramming all the "antibiotics don't work" articles down our throats so that - when we are denied a proper protocol that CAN work - we then ask for all the
sleep meds
pain meds
mood meds
alert meds
calm meds
for life to help with symptoms that persist when the infection(s) never did get
"the right tools for the right job."
Also keep in mind that most LLMDs and LL ND will nearly always insist on proper liver & kidney support, proper gut protection and support, etc. for anyone in treatment for lyme & other tick borne or chronic stealth infections.
This is rarely done by typical doctors when someone gets antibiotics. So the media reports never mention that.
Also many LLMDs and LL NDs will know what else to do for viruses. Too many typical doctors just say there is nothing to do. Bunk. -
[ 11-12-2015, 06:29 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- As you wonder about choices in treatment plans, you might consider whether a different approach would suit your body / infection situation. Many for whom Rx combination approaches did not work have found Rife to be a good help.
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
- by a leading ILADS LLMD - November 2013 -
Posted by WakeUp (Member # 9977) on :
Well, I personally was on antibiotics for two years, and I gave up after reading research by the Brorsons on the cystic forms of Lyme(which are viable for 18 months), which I shared with my LLMD, who is now president of ILADS..
I also know of individuals who were on intravenous antibiotics but who were not cured in the long term.
It was then that I realized that antibiotics may give short term improvement because they kill/suppress active spirochetes, but that they do not effectively penetrate borrelia biofilm, and many antibiotics are not effective against cysts and intracellular bacteria--- and indeed some antibiotics actually cause MORE cysts to be created-- as Eva Sapi's research on doxycyline indicates.
We need more research and a three pronged approach!!
For many of us, antibiotics simply suppress symptoms, but do not ultimately cure.
This is why I am diligently working every day on the spirocheticidal compounds and antibiofilm thread!
Posted by Keebler (Member # 12673) on :
Starting with one of THREE posts here by Pamela Weintraub, be sure to read all of her posts. Be sure to read her book, too. She overcame long-standing lyme is a similar fashion.
Question 1. Do you think amoxicillin is strong enough to fight the Lyme?
TF replied: Amoxicillin is used to treat lyme disease. It is easier to take than doxycycline. I was cured of lyme by taking amoxi plus probinecid and flagyl.
See the Burrascano Guidelines for the correct dose of amoxi to kill lyme. See this quote:
"*Amoxicillin- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed" (page 18)
In plain English, this says Adults: 1 gram every 8 hours plus probenecid 500 mg every 8 hours; doses up to 6 grams (6,000 mg) daily are often needed.
When I was treated for lyme over 11 years ago, I was given 1,500 mg of amoxi every 8 hours plus probenecid to keep the amoxi from being eliminated from the blood quickly. The probenecid is a must.
Then, in addition to the amoxi, I was given flagyl to kill the cyst form of lyme. If all you are given is one antibiotic at a time, you will NOT kill lyme because it is smart enough to know how to avoid being killed by any one antibiotic.
You must be on both the amoxi and the flagyl (plus the probenecid always with amoxi).
You MUST study the Burrascano Guidelines and find a doctor who follows the Guidelines.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
[end TF post] -
Posted by Keebler (Member # 12673) on :
- One consideration with antibiotics is c. diff. And that can be very dangerous. However, there are also some things that can help prevent it when one requires antibiotic treatment for otherwise serious infections.
For starters: avoid proton pump inhibitors; beyond just basic probiotics, some very specific ones need to be on board:
C difficile - prevention / help -
Posted by kreynolds (Member # 15117) on :
WakeUp and Keebler,
Thanks for ALL of the info! First off I am on a ton of anxiety meds, was sleep med for a while, but got off of them.
I currently take Hydrocortosone( yes i said it, a steriod with Lyme, what I am thinking?) I have to take it for the Addison's disease.
Also I am on High Blood Pressure meds along with the typical array of ABX.
I want to explain that I am most certainly not in the best scenario to see an LLMD.
I am on Workers Comp, was bit at work, never saw the darn thing....
So therefore I cannot see an LLMD, I have to follow their Infectious Disease docs.
I can't afford to see an LLMD even if I was not on Workers Comp, but being I am I have to abide by their rules or my family doesn't eat or sleep under a roof.
I am in a HUGE catch 22 that I just found out will last until I turn 65.... that's 35 more years for me dealing with WC.
I was deemed 100% disabled with no chance to ever return to work again. So at least I got lucky with a good attorney.
At the end of the day I would love to see and LLMD... the reality of it happening though is quite slim.
Thank yo so much again for all of this info. I really appreciate it!
Posted by Keebler (Member # 12673) on :
- Understand, perfectly, that seeing a LL doctor is not possible. It's been that way for me, too.
However, since you can't, I wonder if there might be some way to get a rife machine.
As for steroids with Addison's, yes, required, I know. Still, there are some real considerations for how you might be sure it's within the safe dose range for yourself - and if you are treating infection, that matters, of course to keep infections in check.
Some kinds of adrenal support may help balance the Rx steroid, too. The range of physiological replacement dose is a good to know, even if you may not be able to stay in that range due to Addison's.
The library will have Wilson's book, I hope you can read it.
Please know that my remark about all the drugs to maintain and manage symptoms - a goal of pharmaceutical companies instead of treating infection . . . hope that was not taken as a - can't think of words . . . we all do what we can to manage while also addressing the underlying cause.
But some of the management Rx can have clobbering side effects, too.
Somehow, I hope you might manage to get a rife machine. It just seems to best hope and the most financially wise way to go - in the long run. Maybe someone in your local group has one to share?
If you could approach infections with less Rx, maybe then your body could get better enough not to have all the other Rx on board, too.
I do hope you are able to manage liver & adrenal support. There are some supplements that do double / triple duty. In the "How to Find a LL ND" thread, are books, articles. -
Posted by Lymetoo (Member # 743) on :
I think it's true that antibiotics can be very damaging to the gut. I'm having big problems with my gut after 4 yrs of abx 12 yrs ago. Yes, 12 years ago.
We have to take care of our gut .. it's the only one we have.
So do what you can to tackle this without abx AT THIS POINT. You say you've been on abx for 8 yrs. I would definitely look into Rifing. You can get a very good EMEM5A for less than $500... or you can buy used.
Go for it!
Posted by kreynolds (Member # 15117) on :
Lymetoo and Keebler,
I have been debating with my self about using the Rife Machine for years. So many people have suggested it to me.
I guess it doesn't hurt to try, but like with most things I am very hesitant.
Keebler I agree with you 100% about the steriods. I wish I could avoid them altogether.
I honestly don't know my Lyme and TBD's symptoms from my med side effects anymore.
I just all around feel terrible. I have managed to cut some meds off like the sleep one I was on for a while.
I did this in part because my daughter had just been born and I always felt terribly groggy throughout the day while on them.
It was not easy weening off of it, but I did.
I will look into a Rife Machine and if possible will try it.
Lymetoo... my gut is in terrible shape. Always having to go, sharp pains etc...
I try to take my ABX with a break, but it still is bad.
Thank you both again!
Posted by poppy (Member # 5355) on :
I don't agree with your subject line. Some of us are only still alive because we have been on abx.
Posted by kreynolds (Member # 15117) on :
poppy,
I was just pointing out my scenario and what I have seen lately.
I agree that they have helped me to a certain extent, but also have caused major issues as well.
Sorry my "subject line" wasn't your " cup of tea"
Posted by Judie (Member # 38323) on :
"I was deemed 100% disabled with no chance to ever return to work again. So at least I got lucky with a good attorney."
Wow, that's incredible. Congrats on that.
As for antibiotics, avoid the fluoroquinolones (levaquin, cipro, avelox). They cause persistent anxiety and insomnia even when you stop taking them. I dealt with this side effect for several years prior to getting infected with Lyme.
Levaquin created a whole new set of problems for me to deal with other than Lyme when I was given it again last year. The symptoms can be the same as bartonella and Lyme. My stupid LLMD thought it was a herx and it's taking me over a year to recover from the adverse drug reaction.
The doc wanted to do IV next. I'm so glad I stopped antibiotics at that point. It did create more harm than good for me eventually.
I do know a couple people who have been on oral antibiotics for years to control Lyme symptoms and feel that they're better on it.
Starting with one of THREE posts here by Pamela Weintraub, be sure to read all of her posts. Be sure to read her book, too. She overcame long-standing lyme is a similar fashion.
Question 1. Do you think amoxicillin is strong enough to fight the Lyme?
TF replied: Amoxicillin is used to treat lyme disease. It is easier to take than doxycycline. I was cured of lyme by taking amoxi plus probinecid and flagyl.
See the Burrascano Guidelines for the correct dose of amoxi to kill lyme. See this quote:
"*Amoxicillin- Adults: 1g q8h plus probenecid 500mg q8h; doses up to 6 grams daily are often needed" (page 18)
In plain English, this says Adults: 1 gram every 8 hours plus probenecid 500 mg every 8 hours; doses up to 6 grams (6,000 mg) daily are often needed.
When I was treated for lyme over 11 years ago, I was given 1,500 mg of amoxi every 8 hours plus probenecid to keep the amoxi from being eliminated from the blood quickly. The probenecid is a must.
Then, in addition to the amoxi, I was given flagyl to kill the cyst form of lyme. If all you are given is one antibiotic at a time, you will NOT kill lyme because it is smart enough to know how to avoid being killed by any one antibiotic.
You must be on both the amoxi and the flagyl (plus the probenecid always with amoxi).
You MUST study the Burrascano Guidelines and find a doctor who follows the Guidelines.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics taken together to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
[end TF post] -
Thanks Keebler-- this is excellent information for me!
My ILADS doc back in the 1990s had me on 3 grams of Amoxicillin plus probenicid-- but no Flagyl... I was bitten again a few years later, and just had doxy. for 2 weeks.. I went back a few months later when symptoms came back,, and a different internist (Mt. Kisco Medical Group non Lyme literate) doctor gave me Flagyl. But there has been no truly coherent strategy over the years.
I don't think my original ILADS doctor was using Burrascano protocol in the 1990s or in the 2000s,and instead he was a firm believer that just Amox plus probenicid alone would work. This did not truly work for me, but then again I have been bitten at least 3 times over the past two decades.
Later on(in the mid 2000s) I showed this ILADS doc the Brorsons work on cysts with some photographs, and I told him I wanted to try Tinidazole, so he let me try it, with Azithromycin, but this didnt seem to work that well, either. He tried to get me to do intravenous with no cyst buster, but I had a friend who did it for months, and still did not get better after she stopped. I was also afraid that my gallbladder would give out.
Then the ILADS doc's assistant noticed sores on my arms and scalp, which I just thought were permanent bug bites ( I didn't know about Morgellons) and I got a letter from the office saying they had discontinued my insurance. So I stopped going to that LLMD. I think the assistant was scared of Morgellons. (Maybe or maybe not..)
All of my tests for coinfections were negative, but I don't think my ILADS doc used the Igenex lab because Im quite sure that I have Bartonella.
Come to think of it-- I remember that after a few days of the Flagyl from the non LLMD internist --she only gave it to me because I insisted she give me a parasite test which came up positivefor something, she wouldn't tell me), my thinking cleared up and became very sharp again with the Flagyl.
I tested basically negative for everything Lyme related, but I have had 2 bullseye rashes and one other small bright red rash with ticks attached over the past 2 decades.
I do very much respect my former ILADS doc, but wish that I had followed the Burrascano protocol earlier. He (my ILADS Doc) has had many successes with just intravenous antibiotics alone, but I guess I needed the extra kick of the Flagyl. Plus I believe my body forces the organism into biofilm, and I don't think that the Amox/Probenicid/Flagyl combo will effectively tackle large amounts of biofilm, so probably a forth thing needs to be added in.
Oh well... I guess I just need to try a different doctor. But mine was/is the Prez of ILADs so I just figured that there were not other doctors that could help me. He is really a nice guy and saved my husband's life once, so I respect him immensely and he totally cured a girl with "MS" that actually was Lyme. Buts its quite clear that antibiotics alone have not and will never---cure me.
This is why I am working so hard on the natural Antispirochaetal compounds list. I do seem to have had some success on my Sinus biofilm with daily Pomegranate juice..)
But thanks for this post, perhaps I need to find someone who uses only Igenex and strictly follows Burrascano if I can find such a person near Mount Kisco New York.
Thanks again.
Posted by Phoiph (Member # 41238) on :
WakeUp...
There are alternatives. I was an extreme case (Ill for 8 years, homebound for 5 of those years), and antibiotics made me much, much worse. After being told I was an "antibiotic failure", I was also at a loss. I tried many protocols after that, none of which were successful, or even made improvements.
Fortunately, I found mild hyperbaric, which gave me my life back, and I am now well and med free. I suggest reading all 13 pages of this thread, so you can follow other people's journeys with it:
Here, here. I too have only progressively declined on the best of the best combos that are currently available.
Maybe we can learn something from Syphilis, in that really late stage it gets EVERYWHERE & it is VERY difficult to push back, let alone cure.
I think one will get better results with:
1 Sleep 2-Avoid stress & toxic environments, including mold. 3 Organic foods with lean meats & avoidance of processed carbs & sugars and sugar on the whole.
ABX can then be used as an adjuct, as well as any other cyst or bio busting agent. The problem is that there are so many varieties of tissues in the human body & not all areas will allow for easy penetration of foreign medications.
Posted by Phoiph (Member # 41238) on :
With CHRONIC Lyme (not someone just infected), it is not always about killing the bugs, first and foremost.
In my opinion, this hyper-focused mindset can dig a deeper hole for many people.
For one example, with the bugs as a trigger, the body can get into a vicious inflammatory cycle which drives symptoms that can be mistaken for "bug flares". Antibiotics can have an anti-inflammatory effect, which can further the misinterpretation; (i.e., they may make some people feel better, but may not actually be because they're killing the bugs at all).
Many people are dependent on antibiotics and "relapse" after being off of antibiotics for even 2 weeks...what does that tell you? Why do so many people search for alternatives?
No one is saying antibiotics are not the answer, or at least the temporary answer for some people...There are certainly people who have become completely well from CHRONIC Lyme via antibiotics and are off of them completely...I just don't come across too many of them...
Posted by kreynolds (Member # 15117) on :
Phoiph,
I agree with you 100%. Like you had mentioned with "Flare Ups" that happens to me ALL the time and I was always quick to go on ABX.
Now I have to really think about it when a flare up occurs.
Thanks for everyone's input!
Posted by WakeUp (Member # 9977) on :
quote:Originally posted by Phoiph: WakeUp...
There are alternatives. I was an extreme case (Ill for 8 years, homebound for 5 of those years), and antibiotics made me much, much worse. After being told I was an "antibiotic failure", I was also at a loss. I tried many protocols after that, none of which were successful, or even made improvements.
Fortunately, I found mild hyperbaric, which gave me my life back, and I am now well and med free. I suggest reading all 13 pages of this thread, so you can follow other people's journeys with it:
Thanks so much--- maybe I will give this a try if I can get motivated...
Posted by Catgirl (Member # 31149) on :
Without reading this whole thread, just want to mention that Dr. Oz had a physician on his show recently who said that abx can actually destroy 1/3 of all the good bacteria in the gut and for some patients the good gut bacteria NEVER comes back. That means that these people cannot eat many of the foods they used to eat.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Catgirl: Without reading this whole thread, just want to mention that Dr. Oz had a physician on his show recently who said that abx can actually destroy 1/3 of all the good bacteria in the gut and for some patients the good gut bacteria NEVER comes back. That means that these people cannot eat many of the foods they used to eat.
- That's ME in a nutshell.
Posted by Neko (Member # 46592) on :
I did a combination therapy for 3 months. I have trouble wrapping my head around the idea that someone would take antibiotics for years at a time. It seems like that's being done for lack of better treatment options. Which is a shame.
Antibiotics can be great life savers, and I wouldn't be over 50% better today without them. But they can also be very damaging, both to your gut and needing to be broken down and processed out.
I know people who swear that antibiotics for years at a time got them better, and that may very well be the case. But I just wonder if many of these doctors have a plan or method to the long courses of drugs they are prescribing. If you aren't prescribing appropriate courses of antibiotics, you might be temporarily feeling better by killing active spirochetes inland driving the rest into a cystic state.
I am 100% supportive of antibiotics, but better health for me didn't come till I started rebuilding my immune system and mental health.