posted
hi everybody; I was wondering if anyone knows or could you direct me to a website that can tell me what percentage of people get cured by these long term use of antibiotics? The controversy goes without saying about using them for such long periods of time so I am a bit reluctant about this. It is a known fact that if you use them for long periods of time, they MAY lose their effect due to your body becoming resistant to them. Your input on this is greatly appreciated. thank you susan xxxx
Posts: 30 | From LV, so. calie | Registered: Dec 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
Hi Susan, I think as far as can be determined at this point those "cured" is at 0%. So far this is not something that ever goes away entirely. BUT, that being said, there are many who have achieved a high state of remission....like me. I am about 85-90% in remission and have been highly functional for many many years.
I was very sick, looking something like an anorexic, with cancer after chemo. I have been infected for about 38 years, but I feel better at 50 then I have most of my life. I look pretty normal now too.
Antibiotics are only a part of what is needed to get well. You really have to get your body functioning at the best level possible. It will take some time, and for me, I am a work in progress still to this day.
I try to just get on with my life as much as possible, slow down when my body tells me, but then all of a sudden I realize that I haven't had a certain symptom in months.
There is tons to learn about this illness, and Lyme and related infections are not like any other infections that main stream medicine understands. Your in the right place, but sorry you have the need to be here at all.
Posts: 1251 | From california | Registered: Apr 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I don't know of a web site.. or actually anyone who knows about Lyme... that would attempt to guess at that. Most feel after a certain point Lyme is difficult if not impossible to irradicate.
I do have one statistic.. found in ILADS guidelines. Approximately 60 percent of people relapse if treated with the "normal" course.
Earlier stages of Lyme and coinfections sometimes do seem to have better outcomes.. but because there is no test that can prove a "cure".. or that the organisms have been completely eliminated from the body.. and Lyme can relapse sometimes 10 or more years later... we don't have accurate statistics.
The point of long term antibiotics.. which NO ONE in the world ENJOYS taking... is to kick it down.. keep it from making you deterioate... stop the progression of permenant damage.. and promoting better health in the meantime.
I loved Jellybellies explanation. Just thought I'd add a hody and hope this helps.
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm one of those people tincup was referring to.
In 1996, I had the bullseye rash and was treated with a short course of antibiotics. The rash disappeared, and I thought that was the end of it.
About 3 years later, I started having all these weird medical things happening. I was bumped from one specialist to another for several years before an acupuncturist suggested that I have Lyme.
I found an LLMD and tested CDC positive. That was 18 months ago. I've been on abx ever since.
When I first started treatment, I would have ranked my health at about 18%. I could barely walk, couldn't think clearly, was having periodic seizures.
After being on abx for 18 months, I would rank my health at 75 to 80%. I may not be completely cured, but I've got most of my life back, and I'm continuing to heal.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The % of people 100% cured- low!!! I'd agree with that- but the % of people who get to 99.9% while on maintenance abx- 100% of people I see who stick to an abx protocol. EVERY single person who has gone on longterm abx and stuck with it in our local group- and been treated for all coinfections- has gotten to where I am or better, completely cured. Most like me though, on maintenance abx. No one has remained where they were or gotten worse- with TIME- ALL get better.
If you catch them 2 years into treatment seems to be where many people are extremely frustrated because it feels like sooooo looooooong to them. But 4 years- same people always way better!!!!
And the abx whiners who don't go on longterm and who switch from alt therapy to another- THEY are who I see NOT get better!!!!!!!! Some people can't take Herxing and they don't get that Herxing is GOOD*)!*)!)! I find them frsutrating.
What I love is when people *I* never thought would improve improve. I love it when someone who couldn't get through a sentence speaks firmly and clearly. I love it when our one woman who just kept CRYING over everything the first year just laughs and laughs all the time now. I love it when our lovely lovely person with a movement disorder goes entire meetings without jerking limbs. I love it when one woman with MS I NEVER ever thought would get better (I would tell her the truth, "Everyone I have seen who does X and Y DOES get better." while NOT believeing it would work for her but said it ANYWAY- and SHE GOT BETTER!!!!!!!!!!!!!!!!!!
4 people out of wheelchairs. 6 canes dropped for good*)!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My FAVORITE Story EVER of Lyme Getting Better!!! I will write it on a separate thread!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
suexi
I am a success story of one who has gotten much better without using longterm abx.
I was infected fall of 1995. Six months of abx cured me, or so I thought. Little did I know that the various ills I would endure over the next 10 yrs could all be related to Lyme.
In Aug, 2005, I relapsed and was again diagnosed with lyme. I sought 2 opinions and both said this was "late stage" lyme.
Igenex said I was CDC positive for having had lyme but indeterminate as to whether I have it now. So the two LLMDs made a clinical diagnosis. One was really against abx for chronic lyme and the other was willing. I went alternative.
It has been a long process in itself and involved much research and learning of my own. I did not remain with the original LLMDs, but ended up with a GP who looked at all that was wrong with me (much!). Instead of focusing on only one aspect of my problems, lyme, he looked at my total picture. He worked to detox the large amount of lead in me, the yeast and parasite overload and identified food allergies.
When we began, I was so sick and disfunctional. Today, I am 100% as long as I CAREFULLY avoid red pepper, egg whites, lettuce, halibut and lobster. If I slip up and eat any of those, even as hidden ingredients, my joints flare.
I just met with the dr yesterday to review my latest bloodwork (not lyme test) and the results were astounding. All my vitals are smack in the middle of normal. This was NOT the case when we began working together last April. He proclaimed me a success story and we are now on maintenance mode.
I'm happy to have my life back and glad I did not have to resort to stronger meds although I certainly would do so if safer methods had not worked so well.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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I have to agree with everyone on this one. Antibiotics will bring you to a better place.
However until there is some substantial funding and research there will not be a "cure"
The best you can hope for is to be able to lead a productive life.
I hope this helps,
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
Hi suexi, I took antibiotics for several years, both IV and oral combos. I now feel fantastic most of the time, maintaining on vitamins and supplements.
Any flareups I have, disappear with exercise.
I know I'm not cured, but I feel cured as long as I take my supplements and watch my health.
Hope this helps!
~Spotted pony
Posts: 72 | From Loudoun county, VA | Registered: Dec 2003
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I"ve had really good success treating my long-term Lyme (note: no co-infections, Lyme only) recently with oral antibiotics (6 months of Abx and Buhner Protocol herbs, and detox stuff like chlorella and Welchol).
Now that I feel 100% 'back to normal', we've stopped the antibiotics (I'll be doing maintenance herbs for quite a while), and my LLMD suggests that we look at why I got so sick in the first place. It is true, as the CDC says, that some people who get Lyme DO in fact get better, either with no drugs, or after short courses of drugs (I know quite a few people who've had no longterm issues after treating Lyme via CDC/IDSA-style treatment, though it doesn't work for many of us).
My LLMD and the clinic he practices from think that folks who do get really ill with long-term Lyme sometimes also have something else going on with their immune system. I keep hearing the same thing here- that folks had to deal with food allergies, candida, heavy metals issues, or other forms of detoxification to help them get better or stay better, in addition to the antibiotics and other treatments.
I'll be going in for a heavy metals challenge test (they inject you with chelating agents and then measure how much mercury etc comes out in urine later) to try and figure out what else may have been going on.
When I had been really ill, there's no way that I could have had the energy to pursue this testing or other 'troubleshooting' of my immune system, so I"m really grateful that the initial treatment happened to work so well on me that I now have the energy to pursue further healing so I can minimise my chances of relapse without having to keep taking antibiotics.
There are many theories, like this one, which may explain why some people get better without needing to keep taking medication, and others don't. A very important thing that's been pointed out in this thread is that the timeline can be quite long, but varies wildly among different people with different co-infections, different immune system issues, and different body systems targeted by Lyme itself.
posted
I have recently be diagnosed with lyme disease. I was wondering if there are any stats on how many people DO get cured with the low dosage of antibiotics that is advised by medical community?
I am not sure if I am being naive or just hopeful...but I feel a little better with 100MGs of doxicycline.
Wondering if I'll fully recover with 15 more days of this or if I'll get much worse and then have to get the 400Mgs or higher.
Posts: 13 | From Hawaii | Registered: Dec 2006
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posted
i believe you can become totally healthy (no symptom producing lyme - what i mean by that is, we have many bacteria, fungii, mycoplasma, toxins, ect that are opportunistic and will always live within us, but do not cause disease - symptoms - unless they take over. when they take over, we can become debilitated)..just as one can overcome cancer, or any other disease condition.
i believe you can become totally healthy, but that once cronically and or significantly ill - an LLMD is but one tool in the box you will need to accomplish this.
best, mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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