Suggested Treatment plan. Thoughts please ?

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
migs
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Re: Suggested Treatment plan. Thoughts please ?

Post by migs » Tue 8 Sep 2015 4:09

To broaden the topic slightly, I am curious what the more knowledgeable members here consider the current standard of treatment for straight up BB infection.

Where are we? LHCTom mentioned the cycling of 5 days on/5 off of antibiotics and I have read similar...I read less of the high dose and long term treatments lately. Have treatment approaches changed in recent years?

Eat high dose antibiotics until you get C-Diff then switch to useless herbs and cross your fingers seems dated...I hope.

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LHCTom
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Re: Suggested Treatment plan. Thoughts please ?

Post by LHCTom » Wed 9 Sep 2015 20:37

To broaden the topic slightly, I am curious what the more knowledgeable members here consider the current standard of treatment for straight up BB infection.

Where are we? LHCTom mentioned the cycling of 5 days on/5 off of antibiotics and I have read similar...I read less of the high dose and long term treatments lately. Have treatment approaches changed in recent years?
The current standard for treatment is unfortunately the IDSA Guidelines which appears to be effective for somewhere between 50-90% of early Lyme disease cases. It varies somewhat depending on the clinical situation. The details are here:

http://cid.oxfordjournals.org/content/4 ... l.pdf+html

This might not be a direct answer to your question but since you quoted my off the cuff comment about 5 days on and 5 days off, I feel I should explain my actual views. The antibiotic pulsing comment comes from my understanding of what some practicing physicians have determined empirically to be sometimes effective. But that is nowhere near the real answer that is necessary and does come with some downside such as C-diff risk, promoting bad bacteria in you microbiome toward resistance and disrupting your crucial microbiome balance. This is true of any significant antibiotic treatment. So in order to find a treatment that is both effective and minimizes risks, science must be applied to understand the mechanisms and specifically address them in a focused manner. I apologize for my manner of answering your simple question but feel it’s appropriate.

I think your real question is whether there is a treatment that is closer to 100% effective for all stages of Lyme disease from EM appearance to those with 10 year old cases of chronic Lyme or PTLDS that is hiding in the Lyme disease lore known to knowledgeable people? The answer is no. Many Lyme disease treating Physicians that go beyond the IDSA guidelines have had some success but it’s based on trial and error or empirical efforts and not based on a real focused understanding of the mechanisms and treatment designed specifically toward them. That is what is needed and there is none. Why?

In my case, metabolomic testing shows I have some rather significant metabolic problems. Were these caused by Lyme or just aggrvated by Lyme. I suspect a lifetime of exposure to everything plus infections have pushed my metabolic system to the breaking point. So even if the perfect Lyme treatment was available, it would not correct these metabolic problems. I suspect this is common to most chronic illnesses whether caused by and infection or a lifetime of metabolic and immune system pressures. It turned out my microbiome was the number one problem but only one of a dozen. The microbiome or gut flora is a metabolic organ like a Kidney or Live. Chronic illnesses are probably the result or endstage of pressure on the metabolism that when broken, results in symptoms. That might also explain why many people don't have the classic Lyme symptoms even if the spirochetes are still there hiding out.

I'm of the opinion that anyone with a chronic illness like chronic Lyme, CFS, Autism, Gulf War Syndrome etc... need sto first have their metabolic system tested. If its been disrupted, no amount of antibiotics in the world using any protocol will correct a metabolic endstage problem irrespective of what caused it. I suspect I'm not alone and it may be why Lyme antibiotic treatments are not effective. Guessing at what supplements might help is also shooting in the dark. In my case, more antibiotics may very well just aggravate my microbiome related symptoms. So its complicated and may be unique to each individual.

This problem does require accepting the persistence hypothesis and a true critical scientific investigation of the mechanisms followed by animal model treatment studies and then human studies. The scientific community is at the marginal investigation of the mechanisms stage with significant back pressure due to beliefs within the CDC and IDSA. If you read the CDC “Post-Treatment Lyme Disease Syndrome” section at their website, it’s fairly obvious where their bias lies if you just look at the research cited.

http://www.cdc.gov/lyme/postlds/index.html

It’s fairly sad when the top organization on human disease in the US and world simply ignores the mountain of evidence that at a minimum suggests the hypothesis needs to be tested rigorously. The CDC ignores evidence that a group such as CanLyme lists available for all good scientists to read. Lyme is far less endemic in Canada than many parts of the US but this Canadian group lists and makes it obvious the CDC is simply ignoring the basic tenants of science and doing something akin to evidence selection bias in a fairly blatant manner.

http://canlyme.com/2013/11/01/persisten ... e-disease/

http://canlyme.com/tag/persistence/

The CDC’s bias is also clear in their 2014 Webinar on Lyme persistence.

http://www.cdc.gov/lyme/pdfs/Persistenc ... Slides.pdf

This is the state of the art of knowledge at the CDC... Its SAD! :bonk:

So how will science ever get to the bottom of the PTLDS or Chronic Lyme treatment problem when the CDC is actively discouraging investigating even the persistence hypothesis? Stephen W. Barthold, DVM, PhD testimony is Congress describes the problem very well. Dr. Barthold is one of the most prominent and competent Lyme researchers and his words provides a hint that even top scientists are baffled by the CDC and IDSA anti-science behavior.
I have been engaged in Lyme disease research since its initial discovery in coastal Connecticut in the late 1970’s/early 1980’s. At that time, I was on the faculty of the Yale School of Medicine, and collaborated with Dr. Steere and others to develop an animal model for studying mechanisms of disease and vaccine development. I have continued Lyme disease research upon joining the faculty at the University of California at Davis in 1997. I have been actively funded by NIH in Lyme disease research for over 25 years.

During the course of my Lyme disease research career, I have become saddened by the negative discourse and division that exists among various factions of the Lyme disease community, including the lay community, the medical community, and the scientific community (the so- called “Lyme Wars”). In particular, debate has intensified regarding efficacy and appropriate regimens for antibiotic treatment. Central to this debate is the Infectious Disease Society of America (IDSA) position that this is a simple bacterial Infection that is amenable to simple antibiotic treatment, while also recognizing that something is happening in patients after treatment, known as Post Lyme Disease Syndrome (PLDS).
:oops:

http://archives.republicans.foreignaffa ... 120717.pdf

So getting back to the heart of your question means some discussion of what little progress has been made in understanding the mechanisms and what directions of treatment is suggested. There is no rigorously tested treatment but here are some of the areas making progress that could lead to a real effective treatment.

The pulsing of antibiotics has made resurgence since Kim Lewis and Ying Zhang were funded privately by the LRA to investigate the possible cause due to the bacterial persister mechanism. The basic idea is described fairly well by Kim Lewis in a video available at the Northeastern website or the YouTube version. Kim Lewis is a serious scientist who has received $5M in NIH funding and some acclaim for his work on MRSA persistence due to persisters and biofilms and an antibiotic that addresses the mechanism.

http://www.nature.com/nature/journal/v5 ... 12790.html

Persisters described

https://www.youtube.com/watch?v=qXTPiJWhtDg

The LRA funding that hopefully caused the CDC and NIH to cringe in anti-science embarrassment.

http://www.lymeresearchalliance.org/PDF/LRAresearch.pdf

This has led to research at John Hopkins ( hopefully giving Paul Auwaerter heartburn ) that investigated and showed success in-vitro with the use of pulsing or Daptomycin based on the persister hypothesis and possible mechanisms of treatment.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4373819/

Even the FDA seems to have become interested in treating a variety of persistent bacterial infections due to the effect of biofilms on both the immune system and antibiotic effectiveness.

http://www.fda.gov/downloads/MedicalDev ... infections

A company Curza has FDA and wide backing for the use of its first-in-class antibiofilm antibiotic CZ-1-99 which is based on the combination of biofilms and persisters potentially causing a variety of persisting infections such as Methicillin-resistant Staphylococcus aureus (MRSA), Escherichia coli (E. coli), Pseudomonas aeruginosa, Tuberculosis, Cystic Fibrosis and Lyme disease.

https://www.dovepress.com/borreliacidal ... ticle-DDDT

Bay Area Lyme has helped fund Agile Sciences who has developed a library of proprietary compounds shown to inhibit and disrupt biofilm bacterial defense mechanisms.

http://www.agilesci.com/technology.html

http://www.bayarealyme.org/our-research ... lm-buster/

http://www.curza.com/Technology-Antibiotics

Stanford’s Biomaterials and Advanced Drug Delivery (BioADD) Laboratory has been pursuing a drug to Block Manganese (Mn) from entering the Lyme spirochete that is similar to Loratadine, the antihistamine found in Merck’s Claritin.

Maybe Eva Sapi was onto something!

https://puurelyrandom.wordpress.com/201 ... ssessment/

Besides the biofilm and persister based strategies, not all antibiotics are created equal. The choice of antibiotics has quite a few important variables mostly ignored by the IDSA including:

Bactericidal or bacteriostatic agents
Intracellular or extracellular effectiveness
Blood brain barrier penetration

This is an extremely important issue that is beyond the scope of this post but one can read any antibiotic guide and see the vast number of variables to be considered even without the biofilm or persister problem.

http://www.hopkinsmedicine.org/amp/guid ... elines.pdf

So there is some important work in slow but steady progress even with the CDC and IDSA backpressure and lack of funding. Hopefully an effective treatment will emerge from this mostly privately funded effort on understanding the mechanisms. I know this doesn’t answer your question but hopefully explains why it’s complicated and not making leaps and bounds of progress. If anyone should be accused of anti-science, bullying and dogmatism, it’s the IDSA and CDC. Some of the papers written in Science Journals should be downright embarassing to the Lyme scince community.

Antiscience and ethical concerns associated with advocacy of Lyme disease

http://www.healthunit.org/hazards/docum ... isease.pdf

Bullying Borrelia: When the Culture of Science is Under Attack

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3540629/
Eat high dose antibiotics until you get C-Diff then switch to useless herbs and cross your fingers seems dated...I hope.
No it's alive a well but at least the C-diff can be treated with Poop! This is sad also!

The testing is so bad that many have been told they have Lyme don't and many who have been told they don't, do. And there is no accepted way of knowing if the treatment worked except feeling better. A culture would be nice. But the CDC has attacked and evaded that also.

You can't help but wonder why the Ibis IA/PCR/ESI-MS molecular technique has been used by Marques on mice but not PTLDS, chronic Lyme people or even the brains of people who died of Alzheimer's disease or a dementia? Duh? Selective testing bias? Maybe? :twisted:

Just read Barbara Johnson, Mark A. Pilgard and Theresa M. Russell's paper on the Sapi culture and the bias is just oozing from the paper. How something this bad could have passed peer review is an indictment of the top journals and their reviewers. Maybe they didn't read it or the CDC did their own peer review? Who knows. If this happened in Physics, they would be torn a new A hole. This is how low science has dropped ethically in this arena! :(

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3957795/

https://puurelyrandom.wordpress.com/201 ... ssessment/
"To raise new questions, new possibilities, to regard old problems from a new angle, requires creative imagination and marks real advance in science.”
Albert Einstein
‘It is difficult to say what is impossible, for the dream of yesterday is the hope of today and the reality of tomorrow.’
Robert H. Goddard
These are the quotes Marques had the nerve to put at the end of her persistence slides... :bonk:

How low can one sink? Pretty F...ing low.
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

migs
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Re: Suggested Treatment plan. Thoughts please ?

Post by migs » Fri 11 Sep 2015 19:41

wow LHCTom, thanks for a thorough reply. I am too well aware there is no 100% cure yet but I am always looking for something I missed. You and a few other members are very helpful to find what I may have missed. I do really hope to hear more from Lewis and Zhang because it seems the most credible and realistic path forward right now.

The high-dose, long-term, multiple antibiotic strategy has proven a failed strategy for most. I don't fault anyone for trying (I sure did!) and I applaud many courageous physicians that have treated desperate patients that way...trying nothing or not believing your patient is obviously a worse strategy.

I realize the lab is different than a patients body but we do have the new research as well as credible pulsing stories from Pamela Weintraub and Joseph Burascanno. I have contacted some of Burascanno's patients over the years and have spoken to Pamela Weintraub as well. I would call the pulsing (Cefuroxime or Ceftriaxone) the gold standard of treatment being used right now. It did not bring me to cure when I tried it very much as described by Pamela Weintraub but I did feel closer than I had been for a few years and I have had much lighter relapses since.

Dr. Jemsek has been using pulsing for years now, although differently and not with cephalosporins to my knowledge. He does not employ the antibiotics too long and hard as the theory is to knock back the borrelia somewhat while waiting for the immune system to take the central role in controlling the infection. Constantly exposing the immune system to the infection while using antibiotics to keep it from getting out of control. His treatment got me from fairly ill, and taking WAY to many antibiotics, to a place of higher function with much less medication and cost.

Perhaps my next step will be Ceftriaxone in pulses with less break time and treating to symptom free each pulse...unless we surprisingly get a vaccine that I can use as treatment...that would be much easier on me.

If anyone has (or knows in detail) a personal story or cure by pulsing, please PM me...I would love to ask a few questions as I prepare.

BTW, it is sickeningly true how personal bitterness and ego have taken the place of true science and honest work in the field but thankfully there are still good people out there that are intelligent enough to navigate the gauntlet of the old guard...things are happening.

A man like Allan Steere will never admit to others or himself any error or harm inflicted upon lives. He will go to the grave believing he has done everything he can for the field of Lyme Arthritis...his life's work. On the other side we have the decent sized lunatic fringe of Lyme that keeps everyon's heels dug in. Seems it may end soon...walls are crumbling quickly.

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ChronicLyme19
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Re: Suggested Treatment plan. Thoughts please ?

Post by ChronicLyme19 » Mon 21 Sep 2015 17:32

I agree with LHCTom, I do not think there is such a thing as a standard persistent borreliosis treatment. I think most of us who are chronically ill have multiple things wrong and hence why one simple treatment plan has failed us. By definition, we are the ones that have failed standard treatment, so there is none. What I think should be standard for those of us with chronic illnesses is a thorough investigation of our our body systems. We each seem to have a different set of issues that are key to solving to getting us better. The medical system is set up to find and treat single illnesses, not those with multiple issues at once. Because the IDSA and mainstream medical community follows this mentality, patients are left to fend for themselves, rather than the doctors admitting that they do not understand everything or that there may be multiple issues in play. I also think the intensity of the treatment needs to be scaled to the patient. Some people seem to do really well with more aggressive treatment, while others do not. If the treatment is pushing you beyond your body's limits, I think it's time to scale it back a bit and let your body keep up. I'm thankful that I think many of the LLMDs over the years have learned that they need to be careful not to treat too aggressively.
migs wrote:The high-dose, long-term, multiple antibiotic strategy has proven a failed strategy for most. I don't fault anyone for trying (I sure did!) and I applaud many courageous physicians that have treated desperate patients that way...trying nothing or not believing your patient is obviously a worse strategy.
I'm not sure how you are defining failure here. If you use it in the sense of cure, then I might agree. But in terms of long term antibiotic therapy improving the quality of life and function, I would disagree. I have seen many many people get their lives back, including myself, after extended antibiotic therapy. It doesn't work for everyone (like LHCTom said it might not be the right option for those with GI issues), but I have seen plenty of people that have made significant improvement with long term antibiotic therapy to say it's worth trying. Especially if you are one of those zebras that has a deficient immune system. I might not be cured, but it sure as hell kept me from dying and I've been able to return to "normal" brain function and have enough energy and strength to exercise again.
migs wrote: If anyone has (or knows in detail) a personal story or cure by pulsing, please PM me...I would love to ask a few questions as I prepare.
I'm about to try it again. I'm down to one antibiotic and herbs and once I get settled after the move, I will be trying pulsing again. Last time I made it two weeks before crashing, but this was also before the bartonella was addressed, so I'm hoping that we got all the co-infections and it'll work this time.
migs wrote: BTW, it is sickeningly true how personal bitterness and ego have taken the place of true science and honest work in the field but thankfully there are still good people out there that are intelligent enough to navigate the gauntlet of the old guard...things are happening.
Anyplace there is money to be controlled you will find this, it's not just limited to politics. Sad, but true. Science has no way to police itself.
Half of what you are taught is incorrect, but which half? What if there's another half missing?

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