My title says it all. It will be 3 years this coming June that I will be taking abx. I have over that time felt that I was totally cured, only to be laid low by the disease.
I'm thinking that I may give abx until June to prove themselves and thereafter, try something else? Who has quit Abx and what happened to you?
Posted by sixgoofykids (Member # 11141) on :
I did and used something else.
You can read about it in my blog below, look at October 2008, last post is the first post.
Posted by richedie (Member # 14689) on :
Don't say salt and C! My doctor will not allow it due to the fact that she says it is bogus and that side effects can be very serious.
Posted by anthropisces (Member # 15672) on :
I should have said "who quit that did not use Rife or Bionic?"
I don't mean to bash those therapies. If they work then perhaps I'll be lucky enough to be cured by them one day.
But I want to know; who has quit without anything like that?
Posted by Lymetoo (Member # 743) on :
I'm in the category you don't want to hear about.
It's smart to use whatever WORKS.
Posted by anthropisces (Member # 15672) on :
What happened Lymetoo, you quit and your health went south?
Posted by hadlyme (Member # 6364) on :
I went off abx for over 8 yrs...
Lived just fine.
But then....a year ago, oh crap... symptoms came back stronger than ever. No new bite...
So... I sort of lived to tell about it? 8 yrs of feeling great!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by anthropisces: What happened Lymetoo, you quit and your health went south?
No, I mean that I used Rife.
Posted by BoxerMom (Member # 25251) on :
Hi anthropisces -
I'll hit my 3 year mark in April 2011. I have never felt completely cured, and have only taken short abx breaks during my treatment.
Right now, I feel close to 90% recovered. I plan to take abx until I have no more symptoms, then for 2-3 months beyond that point.
How much improvement have you experienced? Obviously quite a bit, if you've felt totally cured at times. Why so unsure, if you're making great progress? This disease is complex and it takes a long time to achieve remission.
Posted by bcb1200 (Member # 25745) on :
Guys...quite a bit of people get well on abx or other holistic ways.
If you read "cure unknown" it states that 80/20 rule, where 80% of disseminated seem to get well in 1-2 years and go on to live normal lives. 20% require ongoing therapy.
I don't count a re-bite as a relapse. If you hand't gotten rebitten you'd be fine.
B
Posted by seekhelp (Member # 15067) on :
Someone's lying here. OK, SixGoofy just posted on another thread the world's most prominent LLMD states 99.9% of patients relapse. That's WITH appropriate dosing and more aggressive therapy than many so-called LLMDs use.
So for Pam to say 80% of people are just fine after 1 to 2 years of treatment, how?
Who's being truthful? Tough call, huh?
quote:Originally posted by bcb1200:
If you read "cure unknown" it states that 80/20 rule, where 80% of disseminated seem to get well in 1-2 years and go on to live normal lives. 20% require ongoing therapy.
The LLMD in the video says that with abx alone the relapse rate is 99.999%. He has treated over 11,000 patients. Where does Pam get her stats?
Posted by bcb1200 (Member # 25745) on :
How do you define "alone"? Even Dr. B says it is abx, supplements, exercise, and diet. Is that ABX alone?
Weintraub has numerous sources. Dr. B, Dr. R, Dr, J, and patients who were very ill decades ago who are now fine.
Can't watch the video at work. Will try later.
I really think it is a bad precident for people who are in treatment to tell them they have only a 0.0001% chance of being completely well after treatment. I just don't buy it. If you think you are going to relapse you will.
In Under our Skin, Dr. B even states that a certain segment of his patience, and it's not a small segment (assume 20%) require ongoing maintenance therapy indefinitely.
Posted by sixgoofykids (Member # 11141) on :
It's not ME, it's Dr. H's talk!! This is the reason why he's been looking into herbal treatments after the ILADS therapy. I believe he's talking about the ILADS therapy, but it's not entirely clear.
This is why he follows up ILADS treatment with his herbal protocols, to reduce this rate. I think it's good to be aware that if you reach remission you need to stay on top of things and maybe take some herbs to prevent relapse ... and maybe stay on some of those supps, continue to eat right and exercise.
Posted by richedie (Member # 14689) on :
Three years of treatment and not much better than when I started.
Posted by bcb1200 (Member # 25745) on :
I know Six...not mad at you. You have helped so many..myself included.
Completely agree, btw. When I get off abx, I plan on doing support therapy for a long while. This is a motivator to be healthy.
Pam says that OF PEOPLE SICK WITH LYME FOR AT LEAST A YEAR, 80% get better and 20% don't.
The 80/20 applies only to the group who have been sick at least 1 year.
Evidently, the statistics are better for those who have been sick less than a year.
The one year point is when Burrascano says there is a significant amount of compromise to the immune system. That is what makes it difficult to achieve recovery for this group.
"A patient with uncomplicated Lyme disease who had been sick for less than a year required, on average, four months of oral antibiotics to get well. . .If the case was especially complex, or if the patient had gone undiagnosed and untreated for over a year, longer treatment was required. . . . .Much longer treatment."
"17 percent of these late stage patients got well in the first month and remained so. Another 20 percnet got well in the second month. There would be a plateau between the fourth and sixth month, at which point 67 percent of the patients, in total recovered."
"I a patient remained ill 6 months after commencement of treatment, only intravenous antibiotics would do the trick".
The problem is that even though these patients seemed well after 3-6 weeks of IV treatment, they relapsed after a month. They needed much longer treatment which is expensive.
Posted by steve1906 (Member # 16206) on :
As we ALL know, what works for one does not always work for the other!
I stopped all meds about 5-6 months ago. At that time I felt about 60% better.
After 5-6 months without meds I feel about the same. I myself hate taking meds long term.
Good luck with your decision.
Posted by glm1111 (Member # 16556) on :
After 4 yrs of abx and continual relapses I started taking antiparasitic herbs and yes the salt/c protocol which saved my life.
I also want to add that I am not against antibiotics because they saved my life more than once. I think an integrative approach is necessary. If there is a high rate of relapse when getting off of abx, it just makes sense to look outside of the box.
I have personaly found there to be a huge parasitic/worm co-infection that's not being addressed by most LLMDs. The well renowned Dr. K. uses salt/c among other antiparasitics and herbs and treats this infection first.
I will always stay on maintenance dose of the herbs and salt/c so I don't relapse. It just makes sense.
Gael
Posted by nomoremuscles (Member # 9560) on :
I did well on abx therapy of various sorts at first, improving, sometimes substantially, though never going into remission.
Then, after about 4-5 years on and off abx, it was like a switch got flipped. My gut went bad. My Lyme co's turned into more of a classic CFS illness, with a bit of MS thrown in for good measure, and from that point on abx made me worse. Much worse. I went from disabled but semi-functional, to completely disabled during and after my last three years of abx therapy with a top LLMD. I ended up in bed and reactive to most every food.
I have been off abx since 2007, and am doing much much better than I was -- though still a train wreck by any objective measure.