posted
Ok at the risk of starting a firestorm, I would like to know if anyone has gotten better/cured with abx dosages that would be considered normal?
By normal I mean dosages that would be used to treat other conditions such as a sinus infection as opposed to doubling the standard dose of everything which seems to be the norm in the Burrascano protocol. (I am not questioning Burrascano just using this as an example)
I can't help but think overkill as I swallow these mega doses of pill after pill for abx then as we all know you have to control a host of other issues resulting from such high doses. This of course means more pills, oils, leaves or whatever invdividuals are taking as supplements
A good example is Doxy. It seems most can tolerate a 200mg dose but when doubled to 400mg it becomes completely intolerable for many.
Now the docs need to resort to other measures such as IV doxy for these same people that were tolerating the 200mg dose well or switch the med which in both cases often leads to a whole host of other problems.
Forgive my ignorance but wouldn't it seem logical to consider the severity of the illness, assess the germ load prescribe doses based on that criteria? Each of us obviously handle meds differently and each situation unique so to set the bar at 10 feet high right off the bat seems somewhat counterproductive.
Maybe set the first bar at 5 feet and see how many can jump over it. I wouldn't think that those who can function reasonably well would need the same doses as those that are homebound. This of course just comes from my warped perspective.
Alot of the research that I've read seems to be from a decade ago yet some still view that info as the bible of lyme. Are any reputable LLMd's doing current studies yielding new information?
I hope no one is offended here, that is not the intent. I am just looking to better understand different philosophies in dealing with this witches' brew of bugs and meds.
Any and all input is appreciated including from those who have foregone the Abx and teated with other methods
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Great post...
I have had lyme..I don't know..at least 7 years. Untreated to undertreated. Always re-exposed.. Mostly neuro. issues here.
So I have done IV, high dose oral, low dose oral and pulsing.
It took a long time for me to figure out what was right for me as an individual. In my case more was NOT better - more just overloaded my system and got me sicker and more toxic.
Now, with more moderate dosing (Doxy 2-300 mg.s/day)and frequent abx. breaks to give my body a chance to clear out toxins I am about 60-75% better.
My LLMD believes that you can still get better with lower doses - that it just will take longer.
According to him Doxy at 200 mg.s will still cross the blood/brain barrier but it will just take longer then if you were taking it at 400 mg.s. I tend to believe him based on how my body is reacting.
Yeah, maybe 400 mg.s would get me there faster and maybe not - BUT I want to live my life and not be so freaking sick from tx that I am bed bound. With my current regimine (Doxy 2-300 mgs. daily, pulsed with Biaxin 1000, mgs x3/wk and abx. breaks when I feel over loaded)I am able to work out and function at a much higher level.
It works for me - neuro and all. Granted I still have sx that I am dealing with but I have faith in time either the meds or my own immune system will take care of it.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Average Joe...I tend to agree with you. I have a hard time sitting here sick from both the Lyme AND the treatment and say that's ok.
I have thought of it like cancer...they use chemo, which is horribly toxic, but kills the disease(sometimes) but makes you sicker in the process and the fallout is...???
I don't want to feel so sick, while trying to get better. Mentally and emotionally it is extremely difficult when the treatment makes you feel as bad or worse than your original symptoms!
I am inspired by Desertwind, and am leaning towards that approach myself. I have other issues that need to be addressed along with the Lyme so I am going to deal with everything but in moderation.
I would like to know if new research is being done as well. 10 years seems like a long time with lots of sick people and no advances in treatment...
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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posted
Worked for me. I wouldn't say I was on low dose and it wasn't monotherapy .. but lower than what I've been hearing around here for the past FEW years.
When I was first on the board, it was COMMON for people to go "low and slow" .. and I think just as many got well that way...and didn't feel like walking death all the time.
My dosages were hard enough on me and I KNOW I couldn't have handled more.
I think taking 3, 4, and 5 different antibiotics at the same time is overkill. If it WORKS... then OK !! Whatever! It WOULD be nice to know which way is best .. and perhaps it DOES come down to the INDIVIDUAL.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
quote:Originally posted by Lymetoo: Worked for me. I wouldn't say I was on low dose and it wasn't monotherapy .. but lower than what I've been hearing around here for the past FEW years.
When I was first on the board, it was COMMON for people to go "low and slow" .. and I think just as many got well that way...and didn't feel like walking death all the time.
My dosages were hard enough on me and I KNOW I couldn't have handled more.
I think taking 3, 4, and 5 different antibiotics at the same time is overkill. If it WORKS... then OK !! Whatever! It WOULD be nice to know which way is best .. and perhaps it DOES come down to the INDIVIDUAL.
This is very reassuring to me. I'm on low/normal doses and cannot handle heavy duty doses.
I have noticed that when I take a few days break to detox, I am feeling slightly better than I have in a long long time.
I still have a long long way to go, but I can see a little bit of progress even with the doses I'm taking.
On the other hand, I know I would be dead if my only choice was abx overkill.
Lymetoo, I am sooo grateful that you stick around and help lead us out of this pit. Thank you Posts: 1142 | From South | Registered: Dec 2010
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posted
I am a newbie to the world of tick-borne infection treatment, so take my response for what it is worth. (Which may not be much!) I am still familiarizing myself with the various protocols and approaches out there. I haven't been able to find any human studies that fit the mold of double-blind, controlled experiments---for example, a study that matches patients into two groups, getting two different protocols, and determining if one outcome is better than the other. The LLMDs, I think, are too busy treating patients, and the academic ID people are too busy denying that such conditions even exist. I hope I am wrong about this!
In any case, despite my ignorance of the "hard science" I do have a philosophy of treatment. The drugs only give the body a chance to heal itself by reducing the infective load. The drugs don't heal us----our bodies heal themselves.
Antiobiotics can take a toll on the body in many ways, so the trick, I think, is to balance the killing of organisms against the side effects, the Herx reactions, the constitution of the patient. At the same time, we do what we can to balance our immune systems, support our organs, maximize our nutrition, etc.
My son's treaters seem to have a 'low and slow' approach, and given how ill my son has been, I think that's wise.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
It is good to hear that there are success stories that used low dosages. I am also new to all this and last week my doctor reduced my abx dose (200 mg mino to 100 mg mino perday) because it was making me too sick. It seems like I am on a constant herx and only now with the reduced dosage feel any improvement.
Posts: 832 | From Somewhere | Registered: Nov 2010
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quote:Originally posted by Susie R: The LLMDs, I think, are too busy treating patients, and the academic ID people are too busy denying that such conditions even exist. I hope I am wrong about this!
You're RIGHT!
In any case, despite my ignorance of the "hard science" I do have a philosophy of treatment. The drugs only give the body a chance to heal itself by reducing the infective load. The drugs don't heal us----our bodies heal themselves.
Antiobiotics can take a toll on the body in many ways, so the trick, I think, is to balance the killing of organisms against the side effects, the Herx reactions, the constitution of the patient. At the same time, we do what we can to balance our immune systems, support our organs, maximize our nutrition, etc.
Very correct! We have to do our part to help our bodies heal!
-- Right on!
Hambone.. you're quite welcome!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I soooo agree with Susie R.
A balance of knowing when to pull back and when to add. For me it has turned into a dance and a cat and mouse game as I have a more chronic/neuro case.
I knew, just knew that despite what the "Guidelines" say about cardio exerice, that if I could get myself feeling well enough to get back to a healthy lifestyle of running and hiking then I would have a chance to get my immune system up and working again.
It was not until I reduced my dose, added my exercise back in (very slowly) and cut back on some of my detox supp.s that I began to really see a difference.
This is a great post and nice to hear that there are people out there that do better with the low and slow process.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
Pleasantly suprised at the responses here Susie sounds like you hit the nail right on the head, But hopefully this work will be done sooner rather than later. It would only help our cause,especially if there are promising results with lower doses.
I personally believe that one of the prevelent issues with wider acceptance of this being a legitimate illness is the mega or over the top doses often used to eradicate the bugs.
Many conversations I've had outside of this forum point to this as well. Most everyone realizes that lyme is a nasty disease and can cause serious issues as they all seem to know someone that it has effected.
Where I lose them inevitably, is when they ask how to get rid of it. When I tell them about high dose abx for long periods of time their eyes glaze over and I can tell they are gone.
That being said, the vast majority have absolutely NO IDEA about the coinfections so we essentially are required to do battle on multiple fronts to educate. This seems odd as Bart and Babs have been around a long long time.
I don't think that some of the Docs realize that even though we are sick, we still need to be able to function,(those that are able anyway). We can't walk around feeling more sick from the medications than the disease itself, which I suspect is the case in many.
When I first started down this road I was concerned that my doses weren't high enough and that I wouldn't get better because of it. Now that I am on much higher doses I have far more issues with nausea and strange symptoms that I can't determine whether they are side effects or bug killing going on. I am definately concerned about organ issues as well. Be carefull what you wish for definately applies here.
I think from this point forward I am going to persue the lower doses. I would rather function daily at 60-70% and have recovery take a little longer than 40-50% because I'm sick from the meds.
This will probably mean switching docs but if the doc won't/can't adjust for me personally than I'm probably better off switching anyway.
All natural and rife folks or any combination please throw your comments in as well. The more info the better.
Heya Lymetoo, I second hambones' sentiments about you stickin' around for us. But you should certainly know that by now.
Thanks for the great responses all
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I totally agree with Susie...my daughter did it all...hit it hard, abx, herbals, and no treatments at all...zero/nada.
After all these years, the best results for her have been no abx, but herbals...slow, with days off when she cannot handle it anymore.
The question is, though, was it a culmination of all of the above that got her to this point, or JUST the slow approach. It is a question that can't be answered.
Her doctors agree with the philosophy...give your body the tools to fight the infections...but that means supporting the body in a way it can come to a healing of itself.
I have observed many different forms of "attack" on Lyme and co and I will conclude that it is a matter of steady and slow as you go.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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sutherngrl
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posted
Yes! Don't have time to elaborate right now though. Will try to respond later.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i was on 500 mg of biaxin twice a day and did very well until i got c. diff.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
I did the hard, heavy doses and I couldn't function.
I decided it was easier to live with Lyme than try to live like that!
I stopped all meds for 4 months and decided I had to find a better way for "me".
I switched to the slow, steady route and am now symptom free. (Still treating though for a couple more months)
Sure, there were bad days in there, but at least I was able to remain functional during that time.
It's not the best route for everyone and I know people that are getting well both on the slow route as well as the more aggressive protocols.
Lyme treatment is not a one size fits all. Listen to your body. You have to do what's best for you. Posts: 1408 | From Tx | Registered: Nov 2009
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I have had exactly the same questions after 3.5 months on relatively heavy monotherapy, only to not feel much better, but end up with yeast overgrowth and what I think is a further taxed immune system.
At the end of last week, I had decided to call it quits entirely with western medicine antibiotic treatment, because it was worse to treat than simply to learn to live with Lyme. (Thankfully, I am not disabled from this disease; were I in worse shape, I might feel that the more aggressive course of action bore less relative risk.)
I've heard from others that they have improved on low doses, manageable for longer periods. Those stories, as well as the responses to this post inspire me that antibiotic treatment at low doses might still be an option, rather than looking solely at alternative, immune building therapies.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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posted
I agree. Thanks for starting this post. I am about ready to not do any more antibiotics because they are truly killing me. My Lyme was bad, but my life on meds has been worse X100. Ive been treating on heavy doses of abx since April 2010. All monotherapy.
Have taken several breaks for long periods of time because my body just stopped functioning.
I need to be functional and I am semi-functional with Lyme (no tx) and non-functional while treating.
I am going to talk to doc about SUPER slow and steady... if I can even handle that.. who knows.
posted
Randi, The c-diff is definately something I am concerned about with the heavy doses. It seems once you get that it's tough to get rid of. Also afraid of stomach ulcers ect ect.
I'm thinking that the lower doses don't necessarily need to be mono therapy. I completely understand that if you drive all the lyme into cyst form then you will also need a cyst buster in conjunction with something for active form. Or, some may want to hit Bart and Lyme simultaneously. This makes sense however, I'm not convinced that we need to take the whole bottle of every abx at each sitting.
Now those that swear by the more intense treatments please don't curse me and understand that I am not trying to steer anyone one way or the other. I just mainly wanted to know if anyone was successful with differing methods.
This is cool. I thought I was going to be either hung in the lymetown square or burned at the stake for posting this.
Thanks again all! Keep it comin'
-------------------- If you play at the beach, expect to get some sand in your shorts Posts: 223 | From central pa | Registered: May 2010
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posted
People vary in their responses and many doctors fit the treatment to the response.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
up
Posts: 648 | From northeast | Registered: Feb 2009
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I did lower dose and got well. Yes, I relapsed, however...funny story. We now think the bart is gone, the babs is low- however the lyme was not treated adequately.
So, back on abx.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I have been actively trying to deal with Lyme for over 5 years now and I have tried 'hitting hard' with abx and herbals...as hard as *I* could handle...and it got me nowhere, but I surely felt worse! I thought I was going to die. I felt like I was completely toxic, despite doing all sorts of detoxing.
Intuitively, low and slow *feels* better to me and is what I am going to propose to my Dr. as the next course of action. I am not tollerating anything well right now and I think its all just too much.
Seriously, we have all suffered enough from the disease itself! Why continue to suffer from the treatment that may/may not work?
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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I'm thinking that the lower doses don't necessarily need to be mono therapy. I completely understand that if you drive all the lyme into cyst form then you will also need a cyst buster in conjunction with something for active form.
- Right... no one is saying to take just one med all the time. I took many combos. It IS essential that you throw in the flagyl or tinidazole to get rid of the cyst form.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I am interested in low dose therapy since I don't tolerate normal or high doses very well.
I wonder if this can also be done for bart and babs?
Posts: 581 | From CT | Registered: May 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Dosing is far less important than duration. People tend to change up medications monthly, but staying on the same therapy for 6 months is usually effective for most patients.
A simple combination of Tetracycline and Biaxen/Plaquenil works very well for people who "ONLY" have Lyme Disease. If you have co-infections then you're talking about a different therapy routine.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I am wondering too if lower dose is better than high.
I know the die off makes you feel ill but to make yourself so ill with drugs that you can't function in life....I just don't see the point...then you are basically the living dead.
Posts: 131 | From ontario | Registered: Oct 2010
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'Kete-tracker
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Member # 17189
posted
"Low dose" abx? Abx levels "that are normal'"?? All depends on your definition of the same. And the disease.
As far as a CURE, i wish there Was one for late-stage Lyme. Seems all most can do is get it "in remission", whateverTF that is!
My PCP used to bleeve that abx,like doxy,would take care of Lyme at 'standard' doses (i.e: 100mg b.i.d. for an average 155# adult). It would just take longer. Now he's convinced you need "higher" doses earlier
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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I'm thinking that the lower doses don't necessarily need to be mono therapy. I completely understand that if you drive all the lyme into cyst form then you will also need a cyst buster in conjunction with something for active form.
- Right... a cyst buster is definitely needed.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I'm replying again to this post in order that others may have more to add, particularly what low-dose antibiotics have been helpful.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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posted
I have been on only ominicef gradually increased to twice a day and then zithromax gradually increased to twice a day and that is all for almost four months now? I was never given a cyst buster? When I have bad pain from the zithro they take me off all for 72 hours and then back on gradually.
I pray its working? I do not have any extreme fatigue any longer like I used to and brain zaps are gone. I know I have a long time to go but the protocol seems to work.
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Cured.. no. But neither does any antibiotic that I'm aware of.
Personally, I got a LOT better on mono abx therapy.
Having had this disease for decades undiagnosed, my bacterial load was super high. If my LLMD had started me on combo therapy I probably would have died from the herx/toxin overload.
Slowly ramping up with mono therapy (switching the abx every few months) took me from useless to highly functional. And I never did any "high" dose of mono therapy. Cured? No. But so much better than when I began!
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Kudzuslipper
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Member # 31915
posted
Very interesting thread. I think,sometimes,when you finally get a diagnosis, you feel you want to make up for lost time. In my case 18 + years. So the hitting hard is appealing, But then I hear the cocktails being prescribed...andi think how can that be good too.... And how do you have time inthe day totake all those meds, and supps,and drops, etc. Although I have had this for 2 decades,I am new to a dx and treatment,so far even slow and steady has me herxing evey month.
Posts: 1728 | From USA | Registered: May 2011
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annxyzz
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Member # 20404
posted
I did ABX for 3 years with minor improvement . I did get rid of pain , but was still intensely fluish and fatigued and cognitively discombobulated.
I am now trying rife and herbs and see some genuine progress for the first time. I have read so many ABX failure threads here, that I personally have little confidence in cases where the disease has been undiagnosed for years .
The sad fact is that we know very little about our enemy / enemies , and everything is experimental.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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sutherngrl
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Member # 16270
posted
I have gradually gotten well on low to moderate dosing. I would call my therapy, low and slow, but its working. I am still treating, but I have come a long way.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Kudzuslipper
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Member # 31915
posted
Very interesting thread. I think,sometimes,when you finally get a diagnosis, you feel you want to make up for lost time. In my case 18 + years. So the hitting hard is appealing, But then I hear the cocktails being prescribed...andi think how can that be good too.... And how do you have time inthe day totake all those meds, and supps,and drops, etc. Although I have had this for 2 decades,I am new to a dx and treatment,so far even slow and steady has me herxing evey month.
Posts: 1728 | From USA | Registered: May 2011
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MannaMe
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Member # 33330
posted
My husband has been taking supplements for years to build up his immune system. He was sick but we didn't know what it was then.........now we know - Lyme & Co.
He is very sensitive to starting new things, so his LLMD started out with low doses of ABX. This is only his second month of treatment so he's still feeling worse than before he started treatment. He is still able to "live" with the herx.
We took a list of all his supplements along in for the doctor. The doc said its fine to continue taking all of them. He even commented on a few that he recommends.
Posts: 2249 | From USA | Registered: Aug 2011
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Catgirl
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Member # 31149
posted
Really good posts!
Desertwind and Suthern girl, do either of you have babs?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I have my next appointment in a week and I'm definitely going to ask if we can switch to the low and slow method. I just can't function this way, it's too much on my system. I'm also going to ask about monotherapy. If you take one abx at a time for 6 months and then switch to another for 6 months and so on; making sure you take something for each form, is it possible to get better that way?
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Low and Slow for me is the only way I can go. I tied the other and it was worse than lyme. The low and slow is what my LLMD finally decided was best for me.
Does it work, I am not sure and I have seen no improvement but only about a yr in the game.
I hate this disease.. hate it..
Posts: 1058 | From VA | Registered: Oct 2010
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posted
i hit abx fast and hard (for Bart and lyme)...very high doses for 3 weeks, then off for one week, back on High dose for three weeks...and the cycle continued for months.
Then we stopped all abx and it was like a free fall into hell. After hitting bottom we hit the abx even harder. I have never been so ill in my entire life (not even when I had Malaria or cholera)
I felt horrid BUT it worked for me and helped get me where I am today. After many many months of that crap and TONS of detox, I am abt 90% better.
Currently I am focusing on parasites (salt/c). I am full of them after working in Somalia for a very long period of time several years ago. Though , yes, I am certain that I can just as easily pick them up living here in NC.
Also currently working on detox, immune system modulation (herbs, reishi, cordyceps, maitake), excercize, prayer and healing my body. All these things function together...moving me closer to health and recovery.
For me, recovering from lyme and co is very much a function of body, mind, spirit, working together to get me closer to healing and wholeness.
"Low and slow" I never have tried it, Average Joe.
I believe low and slow is a good idea, however, it is not the approach my LLMD and I took.
We are all on journeys toward health and wholeness. It is my belief that it is not so much abt abx, doses, buhner et al, other herbal tx...but rather it is that we always strive to move forward toward health and wholeness to the best of our own ability.
posted
Fantastic thread.. Nice to read! I've been doing low doses of abx and getting better. Against the advice of my llmd. There is no way that any llmd on the planet is going to convince me that high doses of abx are good for a person. Yes I ab can work.. But not so well IMO for people who are chemically sensitive to start. I was told my Lyme load is low.. It's the Bart that needed to be knocked down. Seems Like now that my Bart has responded to the abx I'm taking I have a better handle on things. Might not be the case for all but is the case for me... & I'm sticking with it!!
Posts: 96 | From USA | Registered: Jun 2011
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posted
Me Too Lada. Low dose and seeing much improvement. I think it's all so individual. This is not a black and white thinking sorta disease.
Posts: 7 | From North | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
my llmd, who i lost, had me on biaxin only twice a day. he said i had it so long that i could not handle multiple abx at a time. i was just too ill.
adn i couldn't tolerate any quinlones at all.
so i'd say low and slow in some cases is a must. don't want to kill the patient....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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