lyme remission rate

[toml]

In a recent local Lyme support group meeting we discussed the effects of long term use antibiotics and rate of remission as some were concerned about taking these drugs for many years. We thought that as most members in our group were recently diagnosed or just started taking the drugs we were getting a biased view of what to expect long term.

This brought up two questions: We know the disease and recovery is very variable but on the average do most people experience partial or full remission which allows them to reduce the antibiotics?

Secondly some seem to think that even after full remission the better success stories were from those who switched to specific Lyme disease supplements or other natural methods to maintain good health. Just leaving antibiotics without some continuing natural medications often lead to a relapse. Is that a common experience?

[Maz]

@toml wrote:

This brought up two questions: We know the disease and recovery is very variable but on the average do most people experience partial or full remission which allows them to reduce the antibiotics?

Secondly some seem to think that even after full remission the better success stories were from those who switched to specific Lyme disease supplements or other natural methods to maintain good health. Just leaving antibiotics without some continuing natural medications often lead to a relapse. Is that a common experience?

Hi Tom,

The trouble is, there have been no “reliable” studies on the use of longterm abx therapy for chronic Lyme, because it is not acknowledged by the IDSA. The one that is referred to in Lyme circles as the “Klempner Study” is considered to be mightily flawed:

http://www.nih.gov/news/pr/jun2001/niaid-12.htm

Here is just one response to the blood samples used in the Klempner study by Nick Harris of IGeneX labs:

http://www.avonhistory.org/bug/r14.htm

There is quite a bit of info on the flaws in the Klempner study if you have time to do a search on this. These flaws were also discussed at the IDSA hearings that were ordered to be held by Atty Gen Blumenthal in Washington in late July 2009.

http://www.lymedisease.org/news/lymepolicywonk/264.txt

So, the answers to your question are as variable as the many variables involved in all the “unknowns” that go along with Lyme disease and its coinfections. Sadly, until the politics stops and real science begins, we probably won’t have any definitive answers. The trouble is that when scientists (like those in the IDSA) say that science is “settled” in any sphere of science, these scientists cease to be scientists and become evangelists for one occult or another. In all the history of science, nothing is ever settled, because new discoveries are constantly being made that upend old certanties. So, in effect, nothing is settled in the Lymelands and to say that it is settled is highly unscientific….everything about Lyme is still an open book.

This said, the goal of longterm treatment with antibiotics for Lyme is to push the infections back far enough to enable the immune system to catch a break and take over to keep whatever is left of the infection in check. Any infection we pick up in life will remain with us for life. Dr. R. in NYC probably explains this in the best way I’ve heard to date…click on first video (NewTown Rotary) and I think he speaks to this in the first Q & A after his presentation:

http://www.lymeresourcemedical.com/resources.php

Thing is, a good majority of Lyme patients probably do reach credible remission on abx therapy, but the relapse rate is also quite high, according to my LLMD. I have heard stats as high as 95%. This is why many Lyme patients will remain on a low maintenance dose to keep symptoms held back. All in all, this isn’t such a bad thing when comparing the conventional alternatives for treatment of rheumatic diseases, which are generally expected to be taken for life in ever-increasing doses.

As to the second question, there is no doubt that doing what one can to strengthen immune function while on abx therapy for Lyme and after acheiving remission can only be a good thing. Lyme has a tendency to revert to dormant cystic form when under threat and a strong immune system poses such a threat. So a healthy lifestyle that includes diet, exercise, supps, sauna and other forms of dextoxing can only support immune function. The downside is that no matter what we do to keep immune function strong, there will always be stressful life situations that may compromise immune function…accident, surgery, the passing of a loved one, illness, simply getting older and aging, etc and there can be no guarantees that remission will hold for life until we come to the end of our lives. For this reason, it’s impossible for any therapy at this time to claim “cure.” And, until an irrefutable cure for Lyme is found, all we have to hit our infections and regain some quality of life are abx with supportive supplementary adjuncts.

I know…frustrating, eh? I think any LLMD, though, worth his/her salt will honestly say that none of this is an exact science yet (including testing) and so they do their best to help us and use whatever they can in the way of skilled clinical diagnostics and treatment to get us well again.

What I can tell you, from personal experience, is that I could not have been more severe and antibiotic therapy has probably saved my life and given me back a quality of life that would probably have seemed impossible to your average doctor without immune-suppressive therapy. It’s taken a long time for me to turn this around and it’s been a three step fwd, two step back dance all the way, but I’ve acheived these results without any form of immune-suppression whatsoever. My LLMD’s goal is to get me into abx-free remission, but due to the degree of severity of my RA, I would not be at all surprised if I needed to remain on a low-dose maintenance therapy for life.

[toml]

Many thanks again for the thorough and informative reply.

It is sad that science can not operate well in our health care system without the influence of those that want to steer us away from the truth. I guess we can only keep plugging away in groups like this to get the word out and hope that we can overwhelm the cynical forces out there that do not see clearly.

I will get my results back from the lab this week I think and will post them for your comments. I do have an appointment with a LLMD early in January in case the results are positive. If negative the same doc has treated complex infections and will do AP therapy for these arthritis like symptoms I am having. Will be so happy to finally get closer to a diagnosis.

I did change from an HMO to a plan to one that allows me to pick and chose doctors, specialists without the pass through primary provider’s permission. Whew!! that alone is a great step forward.

I do appreciate the thoughtful advice and always prompt response to my questions.

Tom

[Maz]

@toml wrote:

It is sad that science can not operate well in our health care system without the influence of those that want to steer us away from the truth. I guess we can only keep plugging away in groups like this to get the word out and hope that we can overwhelm the cynical forces out there that do not see clearly.

I will get my results back from the lab this week I think and will post them for your comments. I do have an appointment with a LLMD early in January in case the results are positive. If negative the same doc has treated complex infections and will do AP therapy for these arthritis like symptoms I am having. Will be so happy to finally get closer to a diagnosis.

I did change from an HMO to a plan to one that allows me to pick and chose doctors, specialists without the pass through primary provider’s permission. Whew!! that alone is a great step forward.

Tom, the following link just came into my Lyme support group and thought you might like to share it with your support group as it speaks to this topic you’ve brought up. It’s co-penned by Lorraine Johnson (of CALDA) and Dr. S., a well-known, highly experienced LLMD.

http://www.fasebj.org/content/24/12/4632.full

Great news on both counts! The LLMD appt and the new insurance carrier allowing you to see out-of-network docs! Huge relief to get this stuff sorted, eh?

Let us know how you get on at your appt and, if you post your IGeneX results here, we have a few experienced interpreters who can provide some lay insight for you.

[Author]

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