Has Anyone Here Recovered from Lyme Disease?

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
RitaA
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Joined: Thu 1 Jul 2010 8:33

Has Anyone Here Recovered from Lyme Disease?

Post by RitaA » Tue 29 Mar 2011 23:14

It's completely understandable that people here don't always agree, but I'm having difficulty figuring out if anyone here has truly experienced a lasting benefit from any type of treatment for Lyme disease.

My bottom-line question after trying to figure which members believe in what, is simply:

Has anyone here recovered from late-stage Lyme disease?

Since no two people are biologically identical, I'm not asking about specific antibiotics or herbals or even voodoo (which I would gladly try if I thought it might work).

Despite hearing and reading about people receiving successful treatment, critics tend to classify these as nothing more than "anecdotal" -- when the results don't agree with their own theories. I'd be happy to be an anecdotal-only success story as opposed to a number in some possibly flawed study. How on earth can people with differing autoimmune systems and differing exposures to tick-borne illnesses be compared to laboratory mice that are genetically engineered (if you will) to possess very specific traits that might be exposed to very specific antigens?

This is getting overwhelming for me once again. I'm not giving up, but I do need a break.

rlstanley
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Joined: Mon 3 Dec 2007 2:53

Re: Has Anyone Here Recovered from Lyme Disease?

Post by rlstanley » Wed 30 Mar 2011 2:15

Has anyone here recovered from late-stage Lyme disease?
I have.

I was on long-term oral antibiotic therapy, was treated for babesiosis in 1996 and have been doing very well for well over a decade; no antibiotics since 1997. I was tick bit(unsuccesfully tried to remove imbedded tick) w. EM in 1991 but went undiagnosed for over a half year; essentially no recognition of LD where I lived then. Classic symptoms intially which continued to worsen. I struggled for almost a decade to regain my health. SG leader for a decade.
.

Claudia
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Location: Connecticut, USA

Re: Has Anyone Here Recovered from Lyme Disease?

Post by Claudia » Wed 30 Mar 2011 17:35

Regardless of what responses that you get here or on other message boards, I think that it is important to remember that most people recover from late stage Lyme disease following antibiotic treatment. The statistics that I have read, and what Pam Weintraub references in her book "Cure Unknown", is that approximately +80% of patients that went untreated for two or more years (and would definitely be defined as late stage), will respond to treatment and recover. It's the remaining approx. 15% of people that you mostly see remaining chronic on message boards. I live in Connecticut and know several people not posting on Lyme forums who went late stage, become quite ill, finally got treatment, and have recovered and gone on with their productive lives -- medication free.

My son was very, very sick after going five years with untreated, late stage, CNS Lyme disease. With long term oral antibiotic treatment he is now a full time college student with a 3.0 cumulative GPA and will be graduating in June as a fifth year senior (I mention his GPA because to me this is a miracle, he had lost about 30 points on his IQ pre and post infection, and he'd tell you himself that he "felt stupid" for a long time, he was so cognitively impaired). It was a very long haul to improvement/recovery. He basically slept 16-20 hours a day for the first 6 months after starting the antibiotics. He lost a lot of weight and muscle tone during that initial period. It has taken him several years to regain a majority of his mental/cognitive and physical health. He isn't cured in that he hasn't yet achieved a pre-infection level of robust health, but he has recovered significantly. His IQ has rebounded, he has a social life, he now has enough physical stamina to work out at the gym.

He has tried to go off the antibiotics several times over the last few years but his symptoms start to come back. Because he lost all of his high school years being so sick and truly so dysfunctional, we decided to keep him on suppressive antibiotics (IM Bicillin) so that he is able to successfully complete college. We decided not to chance a big backslide at this vulnerable point in his life. One of my biggest fears as his mother was that if he dropped out of college due to poor cognitive function or from physical symptoms, that he'd never go back and finish his degree. So, at this point in time, I don't know for certain how his recovery would have progressed or regressed had he completely discontinued antibiotic treatment. Time will tell...

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Has Anyone Here Recovered from Lyme Disease?

Post by RitaA » Wed 30 Mar 2011 21:59

rlstanley and claudia,

Thank you both so very much for your replies.

I have likely been struggling with late-stage Lyme disease (and possible other chronic infections) for many, many years. My medical history is almost too unbelievable to share with others, so I won't even attempt a summary at this point. I do, however, thank you both very much for sharing your experiences with me.

Neurological and cognitive issues prevented me from working in 2001, and I haven't been able to return because of ongoing health issues. There was literally one thing after another -- with so much variety that my family physician said she couldn't keep up with them or the number of specialists she referred me to. Those doctors who showed any interest at all (and most did not) were clearly stumped.

My neurologist of almost 10 years wrote "Suspect Lyme disease" on my referral to the LLMD I've been seeing since August 2010. I've been treated with 3 oral antibiotics since then, however I had to stop briefly twice due to vomiting, and now because of slightly elevated liver enzymes. My overall health has improved dramatically, although I'm still having major (but fluctuating) cognitive issues and now I'm barely able to walk due to the pain in my feet. My "gut feeling" and brain tell me that I was headed in the right direction, and that the estimated 2+ years of antibiotics that the LLMD thought would be necessary was probably accurate. This was based on his successful treatment of other late-stage Lyme disease patients with sometimes severe neurological, cognitive and other health challenges. One was a professor who became too ill to carry out the activities of daily living -- never mind teach in a university. Her treatment was successful, and she has returned to lecturing. This is just one of many positive and very hopeful results my LLMD achieved through the use of antibiotics.

Based on what I read in "Cure Unknown: The Lyme Epidemic", I am absolutely convinced that long-term antibiotic treatment IS necessary for at least some late-stage Lyme disease patients. I'm not discounting the success others have had with alternative (or supplementary) treatments, however it makes sense that antibiotics would be the mainstay in any treatment of a bacterial/spirochete infection. Vitamin and other supplements, as needed, also make infinite sense -- as an adjunct (not replacement) in the treatment of any chronic or severe illness that robs the bodies of needed nutrients.

As open-minded as I like to think I am, it's pretty obvious that I have a bias for the inclusion of antibiotics in the treatment of bacterial/spirochete infections. Until there's some compelling evidence that other treatment options are superior, I'm going to stick with that approach. Now if only my LLMD's hands were not being tied by his narrow-minded colleagues, that would likely be less problematic. Many of his patients are hoping this unjustified scrutiny eases off, allowing him to practice medicine based on his education, experience and a true gift for healing.

Thanks again for the reassurance I needed.

Rita

rlstanley
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Joined: Mon 3 Dec 2007 2:53

Re: Has Anyone Here Recovered from Lyme Disease?

Post by rlstanley » Wed 30 Mar 2011 23:28

As Claudia mentioned, most people who have recovered are gone from message boards. I linger on this one to see what is happening esp. with the research aspect. I was a research scientist decades ago, and I am perplexed by the lack of quality in non-IDSA LymeLand studies & the tendency towards very poor publishing. It's affiliation with fringe elements does nothing to garner respect and credibility with mainstream medicine. This latter aspect has taken firm hold during the last decade.

To be taken seriously by the medical establishment, one cannot legislate and bully one's way esp if you do not have respectable scientific evidence that can be validated by others. You get that evidence by doing the hard work of decent, well-designed research, publishing well--not skirting around the peer review process--and dissassociating yourself from organizations and people who do fringe and self-serving work. Oh, and by not pretending that contradictory evidence doesn't exist and/or trash-talking it and it's proponents.

I attribute my success to my astute physician who used extended antibiotic treatment. He encouraged me to learn as much as possible and have input in my treatments. I took supplements under a naturopath after I finished antibiotics. They seemed to help me become stronger and healthier after years of medicine.

Do not give up. It took me about 3 years to begin to function at a pretty good level. At the time of my ordeal, I never thought I would ever get back my health. Back in the day, we did not have 'llmd's". We did have some decent doctors who could put together rational treatment programs, and those folks stayed under the radar for the most part. With the advent of 'sharing' doctors' names by certain groups without their consent--they did not want to be inundated with Lyme patients--they left in droves. As a support group leader, I saw what went down over the years.

IMO it is even more difficult now for patients to navigate a path to wellness if the standard treatments don't work and the disease lingers. There are so many strange protocols, weird hypotheses, group enablers of all this, that it takes a lot of personal effort to figure out what possible paths to follow.

Keep learning and hang tough. I wish you well.
.

minitails2
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Joined: Sat 3 Nov 2007 10:27

Re: Has Anyone Here Recovered from Lyme Disease?

Post by minitails2 » Sun 3 Apr 2011 8:46

I too have recovered (I believe) from long-term or late-stage lyme. My treatment was just a multitude or boring old abx. I've been off of them for about 6 months. I was treated for about 6 years, have 20+ year history of lyme. I was also sucessfully treated for babesia.

Good luck to you.

Claudia
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Joined: Wed 14 Nov 2007 1:19
Location: Connecticut, USA

Re: Has Anyone Here Recovered from Lyme Disease?

Post by Claudia » Sun 3 Apr 2011 20:26

Hi minitails2,

I am really happy to read that you are doing well, that's great to know. :D

Camp Other
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Re: Has Anyone Here Recovered from Lyme Disease?

Post by Camp Other » Tue 5 Apr 2011 17:10

I think I'm still in the process of recovering from Lyme disease and possibly other tickborne infections. I think it's only within the past several months that I made any progress at wiping out Babesia and I'm not sure if it's entirely gone.

There isn't any way to know what was in the tick that bit me, so I don't know how many coinfections I received from the bite. I just know what showed up on standard tests.

There has been marked improvement in some of my symptoms since treating Babesia, but not enough that I feel I am out of the woods with Lyme disease or its residual effects. Much as I am able to write and occasionally go out to run a few errands, I need help in getting around because my joints and muscles ache, I move slowly, and I fatigue easily. I feel fatigued all the time, actually - and it is only worse as the day wears on.

I try to have some faith that the problem just needs another angle of attack and more research. I'd like to get back to work full time someday. I'm not capable of that yet, nor am I capable of the more active life I used to have where I went out a lot and did things.

RitaA
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Joined: Thu 1 Jul 2010 8:33

Re: Has Anyone Here Recovered from Lyme Disease?

Post by RitaA » Sat 23 Apr 2011 3:29

Hi rlstanley, minitails2 and Camp Other,

I haven't been on this site since I last posted a few weeks ago, so I didn't see your replies until now.

Thanks for posting and sharing your experiences and advice. There's a steep learning curve when it comes to tick-borne illnesses, and the amount of often conflicting information on the internet is nothing short of overwhelming at times.

There's no doubt that any progress in the diagnosing and treatment of TBIs will require more research, and even a spirit of cooperation and collaboration that has been absent for many years. Strongly-held beliefs can get in the way of doctors and researchers considering other possibilities, and I think there's even more to it. Ego, for one, as few "experts" seem willing to concede that they just might have something to learn from others.

Anyway, I didn't come here to state the obvious -- just to thank you all for taking the time to post.

Wishing you all the best possible health,

Rita

minitails2
Posts: 1001
Joined: Sat 3 Nov 2007 10:27

Re: Has Anyone Here Recovered from Lyme Disease?

Post by minitails2 » Mon 25 Apr 2011 6:40

Hi Claudia!!!

I'm so glad to know that your son is doing so well. What a tough time in life to be sick.

:D

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