posted
could someone tell me how many people here have gotten better from chronic lyme from just antibiotics? do you think its 50/50 or what?
Posts: 723 | From boston,ma | Registered: Jan 2011
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Abxnomore
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posted
I didn't and I feel confident that the percentage of those who did would be very low. The approach in Dr. H's new book is more the way to go.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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surprise
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Member # 34987
posted
Or Burascano's guidelines, which insists on diet and exercise, rest, etc.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
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posted
Katrina- I love your posts and your thought provoking discussions.
Really refreshing!
Thank you! Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I got well on antibiotics, the anti-yeast diet, a few supplements (very few) and the Burrasacano exercise program (1 hour of weight lifting every other day).
This is the Burrascano protocol--a 4-pronged approach. I have 5 friends who also got rid of lyme doing the exact same thing.
So, when you say antibiotics alone, what does that mean? No exercise? Burrascano and my lyme doctor said that I would NEVER get better if I didn't do the Burrascano exercise program.
It was clear to me that this program got me back to normal. It boosts the immune system. This is essential if you don't want to relapse.
It is now 9 years since I got rid of lyme. I have never relapsed even though I have taken steroids, had steroid injections, gone through tremendous stress, and gotten bitten again.
So, this is why I believe in the Burrascano protocol.
Dr. H's protocol just adds to the Burrascano protocol by spelling out all of the factors Burrascano alludes to which can keep a lyme patient ill.
Plus, Dr H adds in a lot of supplements from what I hear.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Judie
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posted
Yes, I healed the first time I was diagnosed with Lyme by antibiotics.
With the reinfection and delayed treatment that I'm dealing with now it's made it more complicated but antibiotics are still the way to go.
I tried alternatives first and totally regret it, no progress and delayed proper treatment. The practitioner blamed me for not healing. I was told things like I needed to imagine "healing angels" or I wouldn't get better which was total BS. I've dealt with Lyme before and other illnesses, my body healed when I got correct treatment, it had NOTHING to do with my emotions/mind.
Started to get better as soon as I got myself into a doc who would prescribe antibiotics.
I'm now progressing with the correct combo of antibiotics.
Finding the right combo was the difficult part since I'm allergic to sulfa meds, minocycline, amoxicillin and several other antibiotics.
Also, you must treat coinfections. I have 13 that showed up in the last blood work.
It's like trying to manage diabetes or another form of chronic illness. You need to find the right meds that work for your body.
I'm taking a bacteriostatic, bactericidal and cyst buster. I really think that's the only combo that touches Lyme. At least that's how it is for me.
Posts: 2839 | From California | Registered: Jul 2012
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posted
You must do everything you can to help yourself get well. I followed a good diet, exercised as much as I could, took supplements, balanced the hormones, all kinds of things.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
It is curious to me that of the many thousands of people treated currently or in the past via antibiotics for chronic Lyme disease, we don't hear proportionately more success stories.
If it was truly a 50/50 ratio (i.e., half of the people treated for chronic Lyme with antibiotics become well), we should be hearing more positive feedback from a greater number of people.
I also find it difficult to fathom that the majority of people who have become well via antibiotics after going through a serious case of chronic Lyme would just "go on with their lives" without looking back; without reporting their success, or attempting to help others find their way.
So, outside of the few on this forum, where are all of these people?
Posts: 2082 | From Earth | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Yes...and I was very grateful to read the success stories when I was very ill, and most happy to add mine to the list.
However, the topic question was, "How many people here have gotten better from chronic Lyme from just antibiotics?"
The 3 pages of success stories go back 10 years. In all of 2013, for example, there were 5 reported "success" stories:
Post #1: Currently on herbs ("Lyme meds" in past), still considered herself "fragile", but greatly improved
Post #2: Became well via mild hyperbaric (after failing antibiotics 5 years prior...my story)
Post #3: Currently maintaining on antibiotics, but noticed more recent improvement with dietary changes (but wasn't sure she would ever attain wellness due to slow rate of improvement)
Post #4: (Young athlete) became well via antibiotics
Post #5: Became well with photon therapy (couldn't tolerate antibiotics)
So...my point is...in 2013, only one posted success story in could be attributed to antibiotics alone...
Posts: 2082 | From Earth | Registered: Jul 2013
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posted
I'm curious how many of you who have had lyme and/or co-infections and have gone through treatment were seniors at the time of diagnosis and treatment?
My mom who is 84 this year and had never been sick to speak of until about 4 years ago was finally diagnosed with lyme in 2012.
Unfortunately, only just now have we come across sites like this one that led us hopefully to someone who can help her.
All the while my mom has been going downhill rapidly with all sorts of symptoms that are listed on this site.
I'm concerned that the cure is going to be so bad that it may kill her...Is that a reasonable fear?
Posts: 6 | From Ca | Registered: Mar 2014
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Judie
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posted
We have to keep in mind that people who got well on antibiotics may not seek out forums or be inclined to post.
I think some people just need more support than others and antibiotics alone are difficult, but others do just fine on them.
My neighbor also got well on antibiotics. He's been free of them for several years and does no maintenance, herbs or any other support (didn't do those during treatment either).
The leader at my Lyme support group also get well. She did IV rocephin for several months and didn't feel improvement til something like 8 months into it. She was in a wheelchair before this.
Now she works full-time and has more energy than healthy people I know. She needs to take oral antibiotics to maintain, but totally got off the more intense antibiotics. She's been well for over 10 years now. She says she has a tissue type where she can't ever get rid of Lyme. She does no alternative medicine.
She doesn't post on forums either.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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posted
"have gone through treatment were seniors at the time of diagnosis and treatment? "
In my support group, I heard the story of someone's mother who started treating when she was a senior. She was in a nursing home and got (mis)diagnosed with Alzheimer.
After a month of IV antibiotics, she started to come out of it and was lucid.
"I'm concerned that the cure is going to be so bad that it may kill her...Is that a reasonable fear?"
I'd find the BEST doctor to take her to that's Lyme literate. It can only help, but you need a doctor experienced with working with someone in a fragile state.
A lot of good Lyme doctors are use to seeing patients who aren't doing well, so it won't be anything new to them. You can then get an honest answer after she's evaluated.
Go to a local support group or find an advocate in your area and get references (or post on seeking doctors).
Posts: 2839 | From California | Registered: Jul 2012
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posted
I suspected my mother had Lyme when she was about 76. That was the year I found out I had lyme. I didn't think she could tolerate treatment, so chose not to pursue it.
She had already had several strokes and was in assisted living. I didn't see how she would be able to tell us when she was herxing, etc. I still think it was the right decision based on what I know about treatment.
Doing IV was not really an option.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Over the years, many new people have posted here to get names of doctors. After that, they just read posts and send some private messages.
Many have told me that LymeNet gets them upset. They are advised to watch "Under Our Skin" for example, and that gets them upset. (It is showing some really bad cases of lyme, if you think about it.)
Then, if they notice the obituary thread, they really freak out.
So, they end up not coming back on LymeNet. That is why they don't come back to post a success story.
My lyme doctor has told a number of these people to stop going on LymeNet since it upsets them.
My lyme doctor says that LymeNet can be a dark place for many people. He told me that the hope I give to people on here is very much needed.
People telling new folks about herxes, etc. can all be frightening. Not everyone can handle hearing this stuff. Many want encouraged, and that's all they want. They are plenty scared already.
So, when you see things from a new person's eyes, you may understand why so few become frequent posters, share their successes, and stick around to help others.
They get the doctor's name and run away.
Posts: 9931 | From Maryland | Registered: Dec 2007
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GretaM
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posted
Yes, there's a person in my support group who was misdiagnosed with Alzheimers also. Literally headed into an old folks home. Started lyme treatment...is WAY better with what I would say is normal memory lapses for an 80 year old.
Also my grandma, at 74 got lyme et al. Wrongly dx'd but given abx for another issue for 2 months at the same time. Lucky that half the abx she got were effective against the tbds.
Secret at any age is an LLMD or LLND.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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surprise
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posted
Very good comment TF. There are times reading the forum it's too hard for me, and I constantly think: I should let this go and move on.
I also think, unlike say, cancer, where you get a diagnostic foolproof test after treatment with a declaration 'all gone!'
chronic Lyme after extensive, harrowing treatment can leave one a bit paranoid when they complete treatments and are better-
there is always the thought at the back of the mind when a 'bad day' comes about: is this an infection?!
Cancer patients are declared in remission at 5 years post treatment. And while some at that point do go about declaring their good fortune,
a large group goes about quietly, grateful, humble, and forever changed, and probably not wanting to revisit the feelings of fear newcomers are going through, nor jinx, perhaps boast.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Thanks to those that commented on treatment for the older patients. I'm optimistic about my mom's future given the right LLMD.
At this point, my family and I are happy we at least found an LLMD who has a decent rep from what I've read thus far.
This site, as well as the multitude of resources sited, have been very helpful.
Speaking as a newcomer, while I agree some of the subject matter can be hard to watch/hear, it's extremely vital to understand the climate surrounding lyme diagnosis and treatment.
Thanks to all of you who have progressed this topic and are on your way to overcoming or have overcome your disease!
Posts: 6 | From Ca | Registered: Mar 2014
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Some of us for personal reasons have decided to no longer post our successes on Lymenet. I am recovered and have moved on. I choose to associate and assist like minded people.
Posts: 532 | From Texas | Registered: Oct 2004
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