Why is the CDC Trying to Block an Accurate Lyme Disease Test

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Wed 3 Dec 2014 15:20

Velvetmagnetta: Sorry I misunderstood where you are coming from. Actually, there is work being done along the lines you suggest. Please examine this listing of current NIH funded grant applications that I also posted previously:

http://report.nih.gov/categorical_spend ... %20Disease

The work being done by Linda Bockenstedt is quite relevant since it shows that the presence of dead intact Borrelia and/or their remnants can generate proinflammatory cytokines that may be responsible for the lingering symptoms of Lyme disease. This was also noted by Wormser in his paper on "amber" Borrelia, as well as in a paper by Alaedini et al. using specimens derived from Mark Klempner's published clinical studies on the effect of extended antibiotic therapy on PTLDS. Since Borrelia posses several adhesins/integrins on their cell surface, this cell debris binds tenaciously to matrix tissue and can stick around for a long time. So, the possibility that you suggest -- and one that I strongly favor-- is now being explored. Mark Klempner and his colleagues -- and others-- are NOW doing clinical studies exactly as you suggest. However, doing good clinical research takes time. But, I predict there will be some interesting new findings revealed in the not too distant future. The main issue, as I see it, is how to determine which proinflammatory cytokines play a key role and how to neutralize their effects safely and effectively. We need to greatly expand our knowledge in that regard.

P.S. At present, because of drastic cuts in the NIH budget, only the top 8% of grant applications reviewed can be funded. So, a lot of very good grant applications dealing with this issue are not going to be funded. That is not going to help

Best,

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Wed 3 Dec 2014 16:29

I've heard this story before. It doesn't end well.

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Wed 3 Dec 2014 21:59

Thank you for your encouraging response.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Thu 4 Dec 2014 0:37

When you already know the script...

;)

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by RitaA » Thu 4 Dec 2014 21:07

velvetmagnetta wrote: No amount of antibiotics is going to kill what's already dead. What most people see as an improvement is really a placebo effect - a very real effect - but it has nothing to do with what they're taking and it doesn't last.
As I'm pretty sure you are already aware, many antibiotics also have an anti-inflammatory effect, and this may partially explain why at least some folks feel better while on antibiotics, only to relapse shortly after stopping them. This obviously doesn't apply in your case, where antibiotics made you feel worse rather than better.

At the risk of getting off-topic, I suppose any and all medical treatments involve at least some degree of placebo (or nocebo) effect. This even includes surgical interventions as described here and elsewhere:

http://jme.bmj.com/content/early/2012/1 ... 01045.full
Med Ethics doi:10.1136/medethics-2012-101045
Research ethics
Paper

The potential benefit of the placebo effect in sham-controlled trials: implications for risk-benefit assessments and informed consent

Remy L Brim, Franklin G Miller

Department of Bioethics, National Institutes of Health, Bethesda, Maryland, USA

Received 21 August 2012
Revised 1 November 2012
Accepted 19 November 2012
Published Online First 13 December 2012

Abstract

There has been considerable debate surrounding the ethics of sham-controlled trials of procedures and interventions. Critics argue that these trials are unethical because participants assigned to the control group have no prospect of benefit from the trial, yet they are exposed to all the risks of the sham intervention. However, the placebo effect associated with sham procedures can often be substantial and has been well documented in the scientific literature. We argue that, in light of the scientific evidence supporting the benefits of sham interventions for pain and Parkinson's disease that stem from the placebo effect, these sham-controlled trials should be considered as offering potential direct benefit to participants. If scientific evidence demonstrates the positive effect of placebo from sham interventions on other conditions, sham-controlled trials of interventions for the treatment of these conditions should be considered to have prospects of benefit as well. This potential benefit should be taken into account by research ethics committees in risk-benefit analyses, and be included in informed consent documents.

[snip]

Sham-controlled trials of internal mammary artery ligation18 (to reduce angina pain), vertebroplasty19 (the injection of cement into fractured vertebra to reduce pain), and arthroscopic debridement of the knee20 (to reduce osteoarthritis pain), all demonstrated that sham surgery had substantial effects on patient-reported outcomes. Even though these procedures were being widely used in medical practice at the time of the trials, none of them resulted in better patient outcomes than sham surgery. In these particular cases natural history may have some explanatory power, as no-treatment groups were not included in these trials; however, the extensive data on pain reduction from the placebo effect, and the meta-analytic data demonstrating the enhanced placebo response created by physical sham procedures, make it reasonable to assume that sham-controlled trials offer a prospect of benefit.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by velvetmagnetta » Thu 4 Dec 2014 21:46

Henry wrote:Velvetmagnetta: Sorry I misunderstood where you are coming from. Actually, there is work being done along the lines you suggest. Please examine this listing of current NIH funded grant applications that I also posted previously:

http://report.nih.gov/categorical_spend ... %20Disease

The work being done by Linda Bockenstedt is quite relevant since it shows that the presence of dead intact Borrelia and/or their remnants can generate proinflammatory cytokines that may be responsible for the lingering symptoms of Lyme disease. This was also noted by Wormser in his paper on "amber" Borrelia, as well as in a paper by Alaedini et al. using specimens derived from Mark Klempner's published clinical studies on the effect of extended antibiotic therapy on PTLDS. Since Borrelia posses several adhesins/integrins on their cell surface, this cell debris binds tenaciously to matrix tissue and can stick around for a long time. So, the possibility that you suggest -- and one that I strongly favor-- is now being explored. Mark Klempner and his colleagues -- and others-- are NOW doing clinical studies exactly as you suggest. However, doing good clinical research takes time. But, I predict there will be some interesting new findings revealed in the not too distant future. The main issue, as I see it, is how to determine which proinflammatory cytokines play a key role and how to neutralize their effects safely and effectively. We need to greatly expand our knowledge in that regard.

P.S. At present, because of drastic cuts in the NIH budget, only the top 8% of grant applications reviewed can be funded. So, a lot of very good grant applications dealing with this issue are not going to be funded. That is not going to help

Best,

Thank you, Henry. I know you know that we are suffering. And I am so happy to see all the different directions researchers are going - not just all about persistence.

And I appreciate your compassion. I know you really do care, otherwise, you wouldn't write. Please, stay with us.

That list was posted once before and I was so grateful for it. Can you keep us posted? Tell us when they have selected which studies will be funded?

I think there is definitely something about the cytokines reacting to trenched-in immunogenic Lyme segments that is keeping some people ill after treatment, but I think there is something else going on.

And the reason I think this has something to do with what RitaA just wrote about antibiotics having a slight anti-inflammatory effect. There has to be more to it. Anyone can go and take pills that are made to be anti-inflammatory and these pills work great - Advil, Tylenol, Naproxen, etc.

Surely, these anti-inflammatories would work better than an antibiotic!

But there is another over-the-counter pill that I take that has icky side-effects, but definitely helps: diphenhydramine (Benadryl). This drug makes you sleepy because it crosses the blood-brain barrier (BBB) and binds to the nerve serotonin receptors. But it also blocks cytokines (histamines) - the ones that are in the spine and brain where other anti-inflammatories cannot reach.

This drug does the job well if you take it in high enough doses. And it would explain why Advil and others don't completely fix the inflammation problem if the inflamed cells are over the BBB. It would also explain why some of those antibiotics do help people feel better - because they do cross the BBB.

But this has all been about inflammation.

I don't think our only problem is inflammation. I once put the question to Dr. Bockenstedt:

Is inflammation (including that of the spine and brain) enough to explain the myriad problems and pain that people have post-treatment?

She did not know. (She's very friendly, by the way, if anyone wants to ask her a question!)

Well, my answer is, I don't think so. But I don't know. Maybe inflammation inside the spinal cord and brain feels differently than inflammation, say, in a joint?

But what about all the spasms? Can those be due to inflammation?

Probably not.

There is much more to this story than any of us suspect, I suspect. That's why we must get out of this "persistence" rut and explore further what damage a bacteria does that can recruit its host's own immune system to burn holes in the BBB large enough to let a relatively HUGE organism inside! What does that do to the BBB? What does that feel like? Does it hurt? Does the body plug those holes right away? What else might get into the spine/brain while the body tries to repair all those holes? How many holes are there? A million? A billion?

We must move on to other theories about post-treatment Lyme pain and disability! Please?!?

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Thu 4 Dec 2014 22:26

There are efforts exploring reasons behind persistent symptoms besides Lyme refractory to treatment. Steere is looking, Aucott,too, as well as others.

But efforts that continue to try to resolve the debate about Borrelial persistence post treatment must also continue, since there is substantial data that supports the argument that Borrelia can and does withstand IDSA-recommended treatments.

No one knows. Or, if they do, they certainly cannot prove their case conclusively. Not the IDSA or ILADS or anyone else.

All the more reason for more monies to be directed into TBD research.

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Fri 5 Dec 2014 0:21

Velvetmagnetta: Since patients with "chronic Lyme disease" most likely represent a heterogeneous population, I wouldn't be at all surprised if what works for one may not work for all. But, this approach could provides clues to help resolve that issue. For example, there is one very small German study showing that treatment with Lyrica eliminated neurological pain in 9 of 10 patients with "chronic Lyme disease".

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Fri 5 Dec 2014 0:55

"Lyrica." "Henry", "you're" "so" "silly" "sometimes".

Please provide data that supports your claim that chronic Lyme cases represent a heterogeneous population any more than Late Stage or Early Stage patients would.

Or does this get filed under unsupported - like the myth that all chronic Lyme cases are people that never had Lyme to begin with.

velvetmagnetta
Posts: 469
Joined: Sun 23 Feb 2014 22:47

Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by velvetmagnetta » Fri 5 Dec 2014 1:28

I take BOAT-LOADS of Neurontin (GABApentin) and yes, it does help somewhat. But it is no cure. It does help calm down tics and spasms and tone-down the nerve pain a bit. It absolutely does not repair the damaged nerves, though.

(I tried the ultra-expensive Lyrica, but it made me fall into walls and feel really groggy.)

Keep looking! You may be on the right track. Is there anything that actually repairs damaged peripheral nerves?

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