posted
I just got a wake-up call from my new LLMD at my first visit yesterday.
I stopped my ABX (doxy and Mepron) about 4 weeks ago and have been feeling better and better. I almost cancelled my appointment.
She said that I hadn't been taking a proper protocol and the likely reason I'm feeling better is because I stopped the die off. Not because I actually got rid of the Lyme, babesia, and Bartonella.
I have a feeling the ABX have been making me feel crappy, beyond herxing, but I don't have proof. I've been on ABX for a year and I just don't know what I've done to myself with that year. I truly don't know all of the dangers of extended ABX, beyond knowing a bit about gut issues.
I want to get rid of this. She prescribed me zith, Mepron, and one other that I can't remember the name of right now. Feeling so clear minded, I'm really not looking forward to what herxing might be on my horizon if I'm still sick.
I have been doing garlic, sida acuta, ledum, cats claw, artemisinin, liposomal c, and a few other more natural supplements. Has anyone ever gotten better, truly better, following a natural protocol?
This is an up and down battle and I just sort of got the wind taken out of my sails. I, like everyone, just want to be healthy again...any advice?
Posts: 274 | From United States | Registered: Feb 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
So she thought you were sicker cause the "SICK" was being killed and sitting around body making you feel like cra_?
Did she say how to get the toxins out ,so you could still treat but not feel so bad?
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
Hi Nonna. She feels I have been feeling BETTER off of the ABX because I'm no longer killing the Lyme, babesia, and Bartonella.
I'm still not certain why I was feeling sicker and sicker the longer I was o ABX. I was a vigilant detoxer. maybe someone else has some insight?
She didn't give me any info on how to get the toxins out. Some things I've been doing in that effort are: sauna, working out, binder supplements, coffee enema, juicing, vitamin c.
Posts: 274 | From United States | Registered: Feb 2012
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I think you have to weigh it . I took ABX 3 years , got rid of pain , but was still awfully sick ! I can not see taking them for 7 - 8 years like some people here . I switched to herbs and rife, and have improved but far from cured .
Frankly , I do not think I would be cured if I took ABX several more years . I do not think a cure is possible for myself after being sick 10 yrs before diagnosis .
I can not see personally taking long years of ABX because they had negative effect on my kidneys and I doubt the liver is unaffected .
You can always go back to ABX after a break . Just a thought . It is probably good to listen to your own gut as well as the doctor.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
It is my understanding that Buhner's protocol is supposed to put Lyme etc into remission, but it is not curative. Personally I think for many people the goal is to recover their health. That means different things to different people.
Hubby has recently been confronting this problem as well. He has been sick for 11 years. Was undiagnosed for 3 years. For the first 5 years of treatment he was on and off meds and herbs and did not really receive adequate treatment. The last 3 years he has been continually on meds -- the longest stretch ever.
Hubby stopped all meds including killing herbs for 50 days and then did a 5 day antibiotic/antimalarial med challenge. He ended up in the ER and hospital. Still waiting on some test results, but for now he is back on several meds and herbs and will be adding more soon.
The fact that you felt well off meds means that you have decreased your pathogen load. Since hubby did not really start becoming symptomatic again until around 30 days off meds we are convinced that he may have actually beaten bart. But babs and lyme and probably ehrlichia/anaplasma are still major issues.
If we could get rid of the coinfections then I think hubby would be satisfied with just doing some sort of maintenance therapy for lyme. But he is not to that point yet.
Hubby has done some IV meds, but he has not done any of the newer IV drugs or real aggressive IV therapy -- haven't really decided if that is something we will pursue further or not. For now we are just concentrating on trying to eleminate the coinfections and then will reevaluate again in another 3 or 6 months and see where we are at.
Hubby's LLMD says we need more info -- but unfortunately I just don't think we will ever get all the answers. Knowing what to test for and what labs to use is very much an educated guess.
I am probably going to look for another herbalist, but the ones we have seen have not really treated all that aggressively. So just not sure what else we can try at this point.
I do think combining herbs and meds is probably the best approach.
One thing I know we need to concentrate more on with hubby is trying to modulate his immune system. That again is a trial and error project. The things we have tried in the past have not really worked for him.
We recently tried LDN again and stopped that when his fevers came back.
The real goal of treatment should be to lower the pathogen load and then let the immune system take over to keep things in control. Much easier said than done.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Seibert, what is LDN? I may have heard of it before, but I'm not sure of the acronym. Sorry about your hubby, sounds like it's been a long road. I hope for some relief for the two of you.
If I've been successful at reducing my pathogen load, aren't they just building up again if I didn't fully get rid of them? A vicious cycle of sorts?
Lymetutu...so...has anyone gotten well without antibiotics? Please...say yes.
I guess I just don't know where to go from here. Focusing on healing seems like it might just be a full time job. I hope I have the energy for it...
Posts: 274 | From United States | Registered: Feb 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
I agree with Lymetoo. Who gets better WITHOUT antibiotics? To my knowledge, no one.
YinYang - Think about the warning on ANY antibiotic prescription ... it goes something like this: "Take the WHOLE prescription, even if symptoms subside."
The longer you wait, the more chance you will wind up with a SUPERINFECTION - because you only "half-killed" a colony that is trying DESPARATELY to OVERGROW the attack from the ABX.
Rembember also, Lyme regenerates only every 28 days - you can only KILL Bb when it is in the process of replicating. So even though you might feel better for a month (or two), you are asking for trouble the longer you wait to restart. IMHO, your LLMD is right... you only feel better because you stopped killing the bugs.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Ugh. Well said Lynn. I get it. I feel like I just set myself back, but I feel SO good! It's an oxymoron. I need to ramp up my courage to forge ahead.
Posts: 274 | From United States | Registered: Feb 2012
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posted
It's good that you're listening to your body.
People tend to think whenever they don't feel well they are herxing, but years later they remain sick. I would consider both options, because you are right, antibiotics do put a lot of stress on your body.
Don't forget the goal is to feel better, not worse. You can't attribute everything to herxing...
Posts: 169 | From The Poconos | Registered: Jun 2011
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posted
MOST of the antibiotics have made me feel horrible. Sometimes I didn't see the gains until taking treatment breaks. SOME of them saved my life, as I was dying, very close to death, at one point in respiratory failure and using a ventilator to help me breathe.
It's sometimes a harder decision when it's not utterly life and death. But remember, "lack of insight" can be a Lyme symptom. I have found that it's actually hard for me not to deny to myself when I backslide, either on antibiotics or off of them.
Last year after years of treatment I tried longer breaks, switching to herbs. I seemed to be holding steady for awhile then old symptoms started creeping in. I still believe I'll get to a place where the herbs can "hold the line."
I would just keep really good track of your symptoms with a rating system so you can tell if you're slipping back or just feeling better. It's my understanding that herbs help prevent resistant bugs but who knows.
I do think you have to be careful though. I had a partner years ago who had previous had "treated" (not for that long) Lyme and seemed fine for several years -- then began to develop psoriatic arthritis, cognitive symptoms, etc.
We just don't know how all of these infections behave. It's a tricky business. In the end, though, you have to decide what your body can handle and what it can't, and go your own road.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
If you have been feeling good the herxing probably won't be too bad. You have all that treatment behind you, keep going, your almost there Posts: 845 | From Northeast | Registered: May 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Ultimately, from some of the stories heard here (including myself), Untreated Lyme can lead to disability.
Personally, I would take my chances and treat.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
I got bit in 1970, or maybe even before. I didn't start getting treated until about 5 years ago.
I believe the ABX, and treating the co-infections saved my life. However, less than a year ago, I was better, but not progressing any further. I was taken off ABX and started on Samento and Banderal.
It looks like I'm now Lyme free. I still have low energy and test positive for inflamation. There seems to be a detox blockage that needs to be treated. But I am so much better, I have hopes of recovering to a large extent, or completely.
I don't think I would've gotten this far on herbs alone. I had to get rid of the co-infections. The ABX, I've read here, doesn't kill the Bb, it just drives it under cover, but the herbs together kill almost all of the 3 forms, and dissolve the biofilm.
So, I don't know if the herbs would work with all the different drugs needed for taking care of the co-infections. My LLMD is starting to have some patients start out with the herbs, but mainly uses them after ABX. I haven't yet heard of the outcome of those using just the herbs (and treating the co-infections at the same time).
Posts: 552 | From New Mexico, USA | Registered: May 2007
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nefferdun
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posted
My experience has been I HAVE to take abx breaks. My body can only handle so much before the side effects take over. The herbs for me have never been curative even though I have taken massive amounts of them.
I just started another break this morning because the drugs affect my sleep making me miserably tired. Waking up for the day at 4AM is the new normal on drugs. Sometimes I hardly sleep at all. When I am off of them I sleep much more normal.
I am damned if I do and damned if I don't - can't get well with them or without them. Something is missing. So I am concentrating on strict diet control, with supplements for methyl cycle mutations.
I haven't gotten my results back so I just supplement as if I have everything wrong under the sun. You have to look at the nitty gritty details to find the reasons why you are not recovering.
If the doctor is not doing blood work to address mutations, elevated iron, hypercoagulation, mold, metals, etc etc then no amount of abx will ever get you well. Herbs won't either.
I started tinctures again this morning. I need a break!!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Yes, yes, getting better without antibiotics. Our adult daughter used abx for only 6 months, and that was years ago.
She has been doing herbs, homeopathy, naturopathy. Also addressing mold, heavy metals, other viruses, thyroid, etc, etc. For about a year now we've been seeing extremely slow tiny improvements. She still spends a lot of time in bed, but it used to be all the time!
Posts: 228 | From Mass. | Registered: Feb 2009
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
A lot of the answer probably has to do with length of the infection. My doc said up front when I was diagnosed "I do not know if you can ever truly get over lyme. " That was an honest answer .
There are people who do but these are my observations after 8 years on lymenet :
people who are diagnosed early ( 2 years ) appear to have BETTER CHANCE OF IMPROVING WITH abx
SOME people who have been ill a long time may get well , though I do not read about too many .
MANY MANY (!) people here take abx for YEARS 6-8 along with drugs , and improve only marginally . That is what is depressing , and many of the rifers are people who would always relapse when meds were removed .
Frankly , it might be good to ask : Who has not gotten well after years of drugs? From my reading the percentage is pretty DAM- discouraging .
That is why there is a book about lyme titled "Cure Unknown" . Many here have taken loads of drugs and had issues with kidneys (ME!) or liver or hearing and have not improved significantly after years of $$$ pills .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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Andie333
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Member # 7370
posted
I also was undiagnosed for years before I finally figured out what was wrong with me. I've always taken antibiotics combined with herbs, and over the past year, I tried to rely only on teasel root and banderol (per medical suggestion).
After a few months, I began to feel I was going backwards. And test results bore that out: my Lyme count was up, and my immune count was very low.
Now, I'm back on the antibiotic/herb combination. I feel better, too.
When that previous backslide started, I feared I'd lose my job. Thankfully, that didn't happen. I'm dealing now with a lot of new symptoms--many of them neural.
All I can do is hope something, at some point will work.
Hopefully, that will be true for you, too!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Personally , the herbs I would take foremost are : artemesia and grapefruitseed extract , because there are many people who have said on this forum that they made a big difference .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Giving it another go. Sounds reasonable at this point. For me. One moment I'm encouraged, the next I'm totally discouraged,
annxyzz, what is the dosage for grapefruit seed extract you have been using?
Posts: 274 | From United States | Registered: Feb 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Richard1062 - Respectfully, look at your own post. Your daughter was on abx for only 6 months, and she still spends a lot of time in bed. Do you see the correlation?
The latest Burrascano/ILADS treatment protocol (for neuro lyme) is to treat with IV ABX until symptoms disappear - and then continue to treat for another TWO MONTHS. The Stricker study (2011) and Fallon study (2008) both indicate that:
4 mos. of IV ABX will control Lyme that mostly presents as joint and muscle pain (neuralgias), with no further gains apparentl from treatment beyond four (4) months: HOWEVER,
the Stricker study found that between 25-52 WEEKS of IV ABX is needed to control Lyme that mostly presents as NEUROLOGICAL symptoms!
So, if you are experiencing panic attacks, brain fog, mood swings, and short term memory loss ... even four months of IV ABX will NOT control the infection that has invaded your brain! And ONLY IV ABX is superior to cross the blood-brain barrier, where the Bb is now living - transported by the cerebrospinal fluid!
IMHO, any long-term (previously undiagnosed) Lyme infection is highly LIKELY to have involve the CSF to have caused neurodegeneration. (These patients often exhibit "white lesions" in the frontal lobes of their brain CAT scans, that are often "misdiagnosed" as MS!) Thus, a lot of folks who have taken YEARS of ORAL ABX aren't getting much in the way of results, when their infections have invaded their brains!
Moreover, IMO, I see a LOT of prejudice, even on these boards to indicate, that the IDSA and Health Insurers have gotten to peoples' heads - making them unneccesarily FEARFUL of IV ABX!
Further, in the Stricker study, researchers were careful to prescribe potent probiotics along WITH the IV ABX - as systemic yeast or C-Diff infections are truly the most common "side effect" of long-term IV ABX use. Out of some 1,500 participants in the Stricker study, only 3 or 4 had "adverse" reactions - 2 of which were hospitalized. (Due mainly to infections at the site of the port, which was clearly caused by inadequate hygiene!)
Compare these potentially "dangerous" side effects to facing a life of complete disability, and/or death from Lyme encephalitis or cardio involvement, and what do YOU see as being the "greater" risk?
Dr. B gave a wonderful lecture on this at the Toronto ILADS conference. If you are not getting results with orals or short term IV (typically 28 days), I suggest you google this lecture, and revisit the subject with your LLMD.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you are considering non-pharmaceutical treatment,
it's best to consult with an ILADS-educated LL (lyme literate) doctor who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present. -----------------------
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links
RIFE links, too.
==========================================
Day Two, note: one session each on naturopathic & and non-pharmaceutical approaches. ---------------
CONFERENCE PROGRAM -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
My sister got well without ABX.
Her symptoms came out of nowhere and she went to doctor after doctor and no one could help her. �At one point a nurse suggested to her you might have Lyme and then she remember the deer tick she found on her bellybutton.
Some of her symptoms were; her vision turning all white, muscle twitches, tremors, heart palps, swollen, popping, and painful joints, pins and needles, nausea and vomiting, and exhaustion. �She also had light and sound sensitivity. �She was in bed a lot for 3-4 months.
She did some research and started eating healthy, and no junk food. �She also consumed raw garlic. �One day she felt a little weird and then suddenly felt a lot of pops in her body and a pins and needle feeling. �Thereafter she got better, and I wonder if it was the death of a larger set parasites or coinfections? �
What else could spontaneously start popping all of a sudden? �Shortly after this she was finally able to get a doc to prescribe her 1month worth of Doxy so she took it as a precaution.
She runs around now with most of her symptoms gone, except for the occasional muscle twitch and she also mentions when she wears a tight cap it cuts off circulation to her head and bothers her.
I believe the initial onset must have been an explosion of something other than BB and ultimately with good diet she got it under control. I still think she has BB in her body though.
Posts: 2087 | From NY | Registered: Oct 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Interesting posts.
Let me clarify ... I applaud wholistic and nutritional methodologies as a general rule - and firmly believe that good or "super" nutrition can go a long way towards healing in any situation - but there are some conditions that need more than that.
Long term Syphilis f'rinstance... which many believe is a close "cousin" of Bb.
My mother has neurodegeneration. Her Lyme was completely undiagnosed and untreated for more than 15 years. In that time she had panic attacks (curious, as she was always extremely independent and headstrong); napped a lot, and occasionally complained of light and noise sensitivity and "tingling" sensations down her forearms. When I finally found a neurologist who suggested we test her spinal fluid, which was positive for Bb, the neuro later said the mysterious "tingling" was evidence of DYING BRAIN CELLS.
Bb attacks the myelin sheath covering brain cells, eventually rendering them useless to transport any electrical charge.
For most of these 15 years, my mother worked, ran a business, and traveled. But it finally became apparent to the family that she should not be driving, and thus, her independence was lost.
Those who commandeered charge of her care continue to believe that 28 days of IV ABX was "sufficient" to treat Bb. Mom was moved far from her diagnosing neuro, and continues to be misdiagnosed by her new medical "experts", while the Lyme damage progresses, unrestrained.
Lyme encephalitis is "subclinical" and insidious. Having watched what my mother has suffered, if it were me, I would treat as aggressively as possible, and as early as possible.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
I am adding a post to this thread because back in 2012, I said I was pretty much well. (ha!)
I was on antibiotics for about 11 years and was stalled with an energy level of 2-3 (1-10 with 10 being great energy). My immune system was badly depleted, and there were many symptoms.
I asked my husband to do research and we decided to get a Doug Coil machine. It's been about 7 months, and I can say that I am making progress, although it's slow going. I have more energy, up to 4 many days, and have less aches and pains.
My LLMD is aware of my change in treatment and is feeling very positive. She will back out meds and supps when they are no longer needed.
The more I learn, the more I'm convinced that having untreated lyme for many years means I probably won't get completely lyme disease free. I do look forward to reaching a level of near normal with a maintenance program to keep me there.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Answer is yes, many people have gotten themselves to feeling better without antibiotics. I'm not sure they've been able to stop the infections, however. My sense is it's more like ongoing maintenance.
Many of us cannot take antibiotics and have to find other routes, and there are lots of them, from various supplements, to immune boosting treatments, to energy treatments, etc.
People have told me they got better from oxygen dives, from Rifing, from a strong PEMF machine combined with Chinese herbs. Just some examples.
I think the whole point of this is to see what we each respond to, and that's a big experiment!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Im very curious how the antabuse/disulfiram drug will be in the future. Its not an antibiotic so it is a good alternative
Ive read and heard from patients that they get VERY good results after 3-4 months.
I never had antibiotics, am diagnosed two months ago and think that i got that infection 2017-2018.
Right now im diving mHBOT every day but i feel worse and worse with stinging everywhere, progressing bad sight, muscle and joint pains and achilis and feet pain.
I dont see improvements right now but a lot of people told me that it could be die off from the oxygen diving.
Im thinking of adding antabuse to my protocol I also purchased IR/NIR lights for the whole body to boost immune system and lower inflamation. Also i do Infrared saunas for one hour few times a week.
I hope i beat those bugs without abx. We will see what ill post here in 10 years (if i still live at this time in the future Posts: 68 | From Germany | Registered: Nov 2019
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posted
Broxin, I took megadoses of probiotics and also saccamyocies boullardii twice a day and kept low carb. There didn't seem to be a problem, unless I ate too much sugar, which gave me candida.
Then I started to rife, and believe I overdid it at first. My stomach started hurting. My LLMD thought it sounded like gall bladder trouble. I took gall bladder enzymes for a couple of months.
Now I drink an herbal tea when needed. It's definitely healing.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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posted
Unfortunately not in the cases that I have seen. Antibiotics has always been the first line of defense when we saw that treatment was needed. However, there are other follow up treatments that are used to aid healing. For example, have you heard of Therapeutic Apheresis? The process of cleaning your blood and plasma at the cellular level can be beneficial in overcoming Lyme disease.
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Antibiotics is a treatment of the past. I don't see any future in antibiotics.
Not efficient, causes damage to the immune system, poisons your liver, make viral infections stronger (and fungal infections too) and definitively not anything I would take, unless I want to treat an active ACUTE infection for very short term.
Even for that, I find a combo of herbs with homeopathic nosodes MUCH better, or even trying to rife on and off...
Antibiotics are not for chronic infectious illnesses, in my opinion. I've been well for more than 10 years, not a single dose of antibiotic in the last 10 years. Daughter too.
For us, homeopathic nosodes, photon treatment, Buhner's herbs, Dr Klinghardt treatments were what gave us our lives back and put most infections dormant, so that we could go on with our lives.
Definitively, you can get well without antibiotics. Just read the success stories here.
Antibiotics, according to Buhner, are just for short term - critters learn how to get around antibiotics rather fast, so if it doesn't work in the first weeks, he recommends you to try something more sophisticated, like a combo of herbs, in rotation.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I have definitely gotten better without antibiotics. I got bit again this past fall and with just 3 EM treatments (this time) lyme is gone. It's astounding what it can do. Had I not lived it, I never would have believed energy treatments could heal me. What a blessing!
eminusmirus.com
-------------------- Remember to keep an open mind Posts: 80 | From earth | Registered: Mar 2019
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Wow, Catgirl. Amazing, really! CongratS!
Posts: 6199 | From Brussels | Registered: Oct 2007
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