posted
Can anyone tell me if they have been advised by their LLMD to take a break from abx treatment? What is a typical length of break? At what point does one take a break?
Many thanks for any feedback! santa_pax
Posts: 58 | From Planet Earth | Registered: Nov 2005
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JimBoB
Unregistered
posted
I do not have an LLMD, so can't tell you WHAT he would say, but I have read many who say they do so.
And it stands to reason, since the Spirochetes cand and do change themselves to hide from abx and our immune systems.
So to keep going and going on abx, without a break and/or change in types of abx and also adding in herbs, doesn't make any sense, as the abx quits working well.
I personally am on abx for 28 days, then off for 7 days. Then switch to a different abx for 28 days, with 7 off, etc.. All the while taking LOTS of HERBS. In a couple of months, I will go off abx for good, I hope. Jim
mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
There are 3 here being treated for lyne. My son was the only one who has taken a break and only for a day or two while herxing strongly.
I have heard that some patients take a break if abx is causing gut troubles or if liver function is poor.
Posts: 1572 | From Pa | Registered: Jun 2001
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posted
My LLMD reckons we should always take breaks when the toxins build up to levels which the body can't cope with.
If you feel really ill on abx and it isn't improving with lots of detoxing and liver support etc. the toxic load can make your illness even worse. A break of a couple of days or even weeks will allow the body to deal with the toxins then you can start again, maybe at a lower dose and build up.
He thinks that the bugs don't multiply quickly enough to lose ground during a break so the overall treatment time may be longer this way but at least the poor patient doesn't die along with the bugs!
good luck.
Posts: 51 | From England | Registered: Oct 2005
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posted
JimBob, do you take a break from the herbs at the same time? My husband's LLMD has him taking antibiotics three weeks with the fourth week off. He is just starting (slowly) to add the herbs from Healing Lyme in.
This week while off the meds, he herxed far more from the herbs, and was wondering if he should be taking a break from them at the same time next month. We're not sure if what would be best in the long run. Any ideas? Thanks for all the help you have been to us!
Posts: 25 | From NC | Registered: Jul 2005
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posted
There is a Rickettsia specialist doctor of Belgium who is praticing in South Africa. She has invented a therapy for Rickettsia diseases which also seems to work very well for Lyme. I know of two people who had very good success with it.
Her approach is to give 7-10 days of abx (various kinds of tetracyclines rotating) and then have a break of 3 weeks, to give the keets the opportunity to come out of their hiding places. This is repeated for about a year and depending on the success, the breaks will then become longer.
She says the breaks are absolutely necessary to drive the bacteries out of hiding.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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posted
Wow thank you JimBob, mlkeen, Elinor, Serenity and Gabrielle for responding! This has been tremendously helpful.
My LLMD seems to want to take a "wait and see what happens" approach, by ceasing abx after 6 months of treatment. I made considerable progress during treatment but remain seriously debilitated by symptoms.
He is proposing a break of four to six weeks ........any comments? I got the impression he may simply want to distance himself from treating Lyme at all.
I DO welcome a break, but want to be sure I am being treated properly in the long run.
Id love to hear more about what is a typical break, and peoples experiences with taking time off.
Posts: 58 | From Planet Earth | Registered: Nov 2005
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I recently took a break- by mistake... Over the holidays, I forgot to take my Bicillin shots with me!
After a week without them, some symptoms came roaring back-
This has been very useful as my LLMD believes that if it was only Lyme that it would have taken longer for the symptoms to show again...
This has led to me trying Levaquin for Bartonella- and although I am very nervous about the potential side effects, I think I'm experiencing more of a herx than I have had on other ABX
In my case- this break may have been a real blessing!
And if some ABX suppress co-infection symptoms, a break could be very useful as in my case-
Just some thoughts...
Sarah
Posts: 119 | From new york, NY, USA | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I BREAK for ABX!
I have taken various break times. But all have been because I was herxing badly. EXCEPT--One break I took started this way, but I stayed off all ABX for 4 months while I moved across the country and had major abdominal surgery.
I think all times I broke were good for me. One time I didnt break during a herx that put me in the hospital for 5 days. I think it was the right thing to push thru that one though.
I treated for 6 months of orals after 2 months of IV in 2001 and had almost 4 years of pretty symptom FREE time. However, if I had to do it over again--I would have been taking ABX longer and/or taking a few months a year of them.
Have you treated for coinfections? That seems to be one reason people relapse after being sugnificantly treated.
The wait and see seems to be typical if you have very little or no symptoms, but many LLMDs treat until NO symptoms.
As someone said to me: slow and steady wins the race. I would checkout the co's and the possiblity of pulsing some ABX from time to time over the next few months.
I am not a doc. Hope it helps, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Why would your LLMD want to distance himself from treating Lyme? Has he had you on combinations of ABX?
Posts: 18 | From canada | Registered: Feb 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
My LLMD told me I can take a break when I'm cured.
I have taken 2 days break 1x. and a one day break here and there probably 3x. I've been on rx for over a year.
Good luck,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
I have had to break. I have been iv and orals a year and still losing significant ground. Problem is my liver enzymes are so elevated, I can't handle anymore. Have no clue what will happen now. I do know that I am very severe. I have heard breaks are needed, to coaxed the bugs out of hiding and then zap them- based on their replication times. Hop that this information is right.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
I don't think the LLMD's have a firm position on this. I have two, one says we will break for 1-2weeks between new abx...the other says no breaks...
Of course I don't know what to do. I am supposed to stop in a week according to my llmd but my LLMD PCP says that I shouldn't since I am still sick.
What to do? I am procrastinating this choice.
-------------------- We are spiritual beings on a human journey...
posted
Serenity: NO, I do NOT take off of herbs too.
THEY work just the opposite of abx in that they BUILD UP rather than seek and destroy.
We NEED the break from abx as they destroy all the GOOD bacteria along with the bad ones. Also, as it was stated, the chetes HIDE from the abx, so they need to be fooled to come out.
I am on Buhner's heaviest recommendations for the herbs, ALMOST. I only take them THREE times a day as opposed to his recommended FOUR times a day. I had to start out slower than he recommended also, as my stomach was so bad before I started, from the Lyme, I imagine, as I was not on abx first.
But I am also on MORE than his primary protocol, so am getting a whole bunch of help. ANY MORE and I can just quit eating and just fill up on the herbs.
My stomach was really bad last month on the Tetracycline, but is much better this month on the doxycycline. THough it is kicking up a little today. Hope it doesn't get worse as I have two weeks to go on the doxy yet.
The C-Salts have helped a lot for taking the vitamin C, high dose; which Stephen B. DOES recommend.
We SHOULD take a break from antibiotics regardless of how much we are herxing or how our liver is functioning, as THAT is the only way they will work after awhile. It could be a few days to a week or so. I do it for a week. The Spirochetes are slow to build back up, so it would be good to give them a chance to TRY to get going again, but not so long as they can get a foothold again.
posted
Folks - my doc said something about if I go off of Ketek that I would be more immune to it if I decided to go back on it later.
I am not sure how long the break would have to be for that to happen...I have a message in to him to clarify.
I was unable to walk last week due to Ketek (herxing or reaction to the drug) so i stopped for the past three days and the pain has gone down quite a bit.
So now I am wondering if I should go back on it or not. If I do, I am going to ask if I can half my doseage (from 400mg to 200mg per day) or pulse 400mg on for three days and go off for three days.
Anyone ever have their doc tell them not to go off unless you intend on staying off due to the immunity factor?
Posts: 331 | From virginia | Registered: Nov 2005
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JimBoB
Unregistered
posted
VaChick I am wondering WHY you are on Ketek to begin with? I have NOT heard any later info than what LymeInfo sent out a few weeks ago, that they thought at least two people had died from Ketek. Have you heard any different lately?
Why not go on a lighter abx along with healing Herbs? Got to feel better and safer on them.
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by HEATHERKISS: My LLMD told me I can take a break when I'm cured.
That gave me a good laugh, thx Heather. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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JimBoB
Unregistered
posted
HUMAN:
Boy, that has to be confusing having TWO docs. Or are they ducks? Just because someone says they are an LLMD doesn't mean they are.
I think ONE doctor is confusing.
Remember, they are only imperfect people too. I find it easier to live with my own imperfections and imperfect decisions rather than to add theirs to the mix too.
I would Definitely break on abx. I am no doctor and know THAT much about this whole Lyme curing thing already in just a few months of study.
I am in it for a different reason than most docs are: I am in it to find the best, reasonable cure and care. NOT in it for the money.
posted
Jim, What abx are considered "lighter"? I was on Biaxin and Omnicef at first and then I read that people died from taking Biaxin!!
I am on Ketek because he says it treats Lyme and the coinfections the most effectively. Plus it has helped a lot of folks, I think. People die from using Advil.
To be honest, I don't trust any of the abx. But if you can tell me which ones are more harmless, I will mention them to my doc to see what he says!
Thank you for your help.
Posts: 331 | From virginia | Registered: Nov 2005
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posted
Jim, And if you have any thoughts on healing herbs I could try, I am all ears!!! Posts: 331 | From virginia | Registered: Nov 2005
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posted
thanks everyone, I am following this with great interest.
Humanbeing, I sympathize with your confusion....Given that the break proposed for you is so brief, it may not be a bad thing at all. What are your LLMDs reasons for suggesting this break, anyway? Let us know what you decide.
Heather, that is how I thought treatment was SUPPOSED to go, you treat until symptoms are gone.
Trails, I dont believe I was tested for co-infections....
Gabrielle I like that break-theory, sounds reasonable to me.
Posts: 58 | From Planet Earth | Registered: Nov 2005
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I NEVER consider a few CAPS yelling. WHY should we? IF you had made it BOLD TYPE and or upped the size three or four fonts, then I MIGHT consider it yelling. OR if you had used ALL caps in your post. I personally like some caps in a sentence so i can pick out the main points easier with MY lame brain.
I consider the caps on SOME words as a sign of kindness, not yelling.
I was thinking along the lines of the "older" abx, that are "proven" and NOT as strong as the ones they keep having to replace them with because of the bugs becoming immune to them; by mutating.
So IF you haven't OVERtreated with one of the older proven abx, such as Tetracycline, Doxycycline, or Amoxicillin, they can work good along with herbs. However, realize tetracycline is very hard on the stomach. I had a hard time getting through a 28 day regimen on them. Doxy is better this month, and hear Amoxycillin is pretty good also. I will be on that next month.
I don't know for sure WHICH drugs are MORE harmless as I am NOT a doctor or pharmacist or scientist either.
However, I do a lot of reading and studying and am trying to self treat myself as safely and with as high a quality as possible. And one thing I do know for sure, is that ALL antibiotics have at least SOME bad attributes for our bodies and the systems that run them.
They are NOT natural to our systems, and are NOT supposed to be in there. They seek and destroy indiscriminately, both the good and bad bacteria. Which is why Acidophilus, Milk Thistle and Sarsaparilla as so important, along with herbs that are anti-inflammatory and/or anti-arthritic, and antioxidents.
However, we do need some abx for a short time, along with herbs and vitamin supplements to take care of these danged spirochetes.
But remember the chetes can hide, change their makeup, and become resistant to abx. So keep changing, and take short breaks for about a week, to fool them as best as we can to catch them off guard and out in the open. They do not multiply real fast according to everything I have read on them. Which is why many stop taking abx and/or herbs altogether and think they are cured, when only in a sort of remission. Then the chetes come out of hiding and start it all over again.
We need to keep taking herbs to build up our systems to fight them when they do come out of hiding.
He wants me to stop abx for two weeks. (Biaxin and doxy)
Then start up again with tetra and biaxin. He said the Bb is a cross between a parasite and bacteria and doesn't act like most bacteria when it comes to resistance.
Says it is very important to get the germ load down before using cyst busters like mepron or plaquinil because the herx can be so bad on a cyst buster that the patient may stop taking it and all those nasty ketes will be difficult to eliminate after that...the cyst buster drug wont work as well
does this make sense?
-------------------- We are spiritual beings on a human journey...
posted
It does. But it is also plain to see he is a abx man only.
IF you take herbs and other supplements TOO, then you won't have the same problems you will have on JUST abx.
Especially take the chete killers and the anti- inflammation herbs.
AND do NOT forget to take the ones you need to clean out your system from all these spirochetes you are killing. Such as: Sarsaparilla, Acidophilus, Milk Thistle, Red Root, etc..
Hope this all helps. Hate to see you on abx only, for ages, without getting cured.
posted
Hey Jim, So now I hav been off abx for three days and I can't believe I am feeling so well. Only slight pain.
You said to take kete killing herbs- is this while off abx? From what little I knoe, ketes are very sensitve to environmental threats. If the goal is to get them out of hiding, shouldn't we stop all kete killer?
I am so confused about this dumb disease.
-------------------- We are spiritual beings on a human journey...
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Human being I am so happy to hear you are feeling better of abx!!!!!!!!!
This is a very good sign. To break or not to break? It is a confusing and I also wish there was more research.
Hopefully with columbia opening soon there may be.
I still think the "therory" of pusling makes sense.
Personally I feel if you take herbs that threaten the ketes into hiding,you may defeat the some of the purpose. Its all a matter of opinion at this point.
Do lots of detox now. Detox teas help me the most.
It is also a good idea to get your germ load down before the cyst busters.
I am again so very glad to hear you are doing better. Have some fun! Play in the sunshine! Be happy! Take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I have 4 LL's. But I currently follow the one I waited for 18 months to see.
He has me on a 1 month break. He told me to detox that I was out of control. I begged him for a script. Since I used to completely fall apart within 48 hrs of stopping abx. I would start slurring my words and falling down. He gave it to me. But I am on day 19 w/o abx.
I have been detoxing like crazy!!!
Chi, Hot house, lymphatic massage, ion foot baths, castor oil heated on belly, kleen free baths, epsom salt baths, photodynamic iv's, glutathione iv pushes, parasite cleanse, lemon in distilled water, colonics, etc.
Some days I herx like crazy but I have had a few days I felt good. I know it is getting lots of junk out. So that is good.
I have been having a lot of pain. But I have tried to back off my pain pills since I am doing the cleanse and the colonics. Since it really slows down the bowels. I never realized how regular the abx kept me.
The best thing about it is that I have TIME to take all my supplements. With my abx schedule it seemed I was lucky to get them in once a day. Now I am doing it 3 to 4 times a day. And taking tons of Chlorella, green tea, burbur detox, along with lots of other things. I have also been taking tons of acidophillus. Atleast 2 Theralac a day and about 8 lacto S plus sublingually.
My memory still sucks. But I am able to drive and walk so that is good. I think it is for the best. I have had lyme so long that I don't think a month will give it a heads up. It has already taken over my body.
Posts: 399 | From Texas | Registered: Apr 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i had to take a break due to yeast issues. Otherwise I would still be taking abx.
from my experience a month really doesnt make all that much difference if you have had it awhile.
I have no clue when i will be able to start back again.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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I took a "break" from abx last year, for around 3 weeks. I was doing very well up to that point, and thought it would be good for my body to take time off the meds.
This resulted in a severe setback for me, unfortunately. I would never do it agin, but if you need a brewak, I may suggest trying one for a shorter period of time....Just my experience....GOOD LUCK!
Posts: 100 | From St. louis, MO | Registered: Sep 2003
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Humanbeing--just so you know--Mepron is not a cyst buster. It is anti-protazoan used to treat Babesia.
Palquenil is a cyst buster only when used in combo with the right ABX.
I am so glad you are feeling better. 3 days seems to be the right # for detox from a lot of these ABX protocols.
SOmetimes TOO much Detox is not a good thing. You can deplete the body of essential vitamins, minerals and such...so balance is what it is all about.
Balance more food for our thoughts, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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JimBoB
Unregistered
posted
Humanbeing:
The MAIN THING is to keep trying to FOOL the Spirochetes. By quitting the abx for a week or so, that will happen.
You COULD even quit some of the herbs for a few days, IF you have been doing this for months.
I NEVER quit the Sarsaparilla, Devils Claw, Cats Claw or Acidophilus. Nor the Stephania Root or the Nettle. I also continue to use my Sali-Pipe (salt pipe), at least twenty minutes a day for my asthma and bronchial problems.
I hate taking the abx and have one week now left on my 28 day regimen of Doxycycline. Then 7 days off. Then I am hoping to do 28 days of Amoxicillin. Though I may stall that off some the way I feel on these abx. They bring back brain fog, vision problems and fatigue. I felt much better on herbs alone.
I went off of my Artemisinin of 600 mg a day today, but kept the Red Root going. I will go back to Artemisinen but at 1200mg a day for 3 days in two weeks.
By summer, I hope to be down on my herbs too, with NO abx at all. Then will see what my body tells me to do then.
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Otherwise I would still be taking abx.
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