Treatment for chronic Lyme goes to FDA

[Trudi]

FYI–
http://www.lymediseaseresource.com/wordpress/treatment-for-chronic-lyme-goes-to-fda-do-we-dare-hope/

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Krys]

Very exciting!!! Thank you for posting it, Trudi.
Krys

[matv]

Its funny, just like fibronyalgia, now that more research and public awareness is apparent, doctors are forced to acknowledge its existence. Hopefully we wont have to wait another 5 years for treatment to not be punishable by some college of physicians (like that of in Canada)

[Suzy]

I might be wrong but this seems similiar to the peptide therapy that Jamminhealth has been posting links to on here from another board. The article from this post does say this would also be used for other conditions as well. I read on the other board somewhere that US docs doing this therapy say that US companies are currently trying to duplicate it. This was first used in Europe ( Oxford College I think) and European and US docs are concerned that when big pharma gets a hold of it…..the price for treatment will skyrocket !

Not sure if it is the same…..maybe not. Either way it is interesting !!

Suzy

[Trudi]

@Suzy wrote:

I might be wrong but this seems similiar to the peptide therapy that Jamminhealth has been posting links to on here from another board.

Suzy–
I thought the very same thing. I will have to do a little more in-depth research, but this looks promising. Just did a quick search to learn some more about peptides–here is one of the articles that caught my eye–
http://www.livestrong.com/article/266917-what-are-the-benefits-of-peptides/

There might be a connection here. My ND just recently put me on a therapeutic dose of Vitamine B6–100mg a day. I read up a lot on it when I checked into Vitamin B6 therapy for my husband’s carpal tunnel symptoms. B6 is so important for so many bodily functions, I was amazed!! Anyway, my OATS (organic acid test) showed that I am very low in B6 and so my doctor said to see if it makes a difference. The reason why I bring this up is there is a real relation between B6, proteins, and amino acids. In the book, Vitamin B6 Therapy by Dr. John Ellis, he calls B6 the “protein vitamin”–the nutrient without which protein cannot be properly utilized. So my lack of B6 could perhaps dominoe into a lack of, say, peptides?

Here is an article which describes the connection between amino acids and B6:
http://www.livestrong.com/article/495901-amino-acid-vitamin-b6/

Trying to connect some dots, since there is a connection between peptides and amino acids, I wonder what part of my being so low in B6 negatively impacts my life. Peptide injections have helped the woman mentioned in the other thread https://www.roadback.org/forum/viewtopic.php?f=1&t=7041 for pain management. What if her body is not metabolizing her foods properly eventually causing a defiticiency in peptides? I’m thinking out loud here, but this is definitely where my research is leading me.

I’ve only been on the therapeutic dose of B6 for 2 weeks. Without doubt it has been helping me. I also started juicing at the end of January so I’m sure that has helped me, also.

Any thoughts on my rambling–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Suzy]

Thanks Trudi for the links…..really fascinating !! Still trying to discern the differences. However in reading your link I came across this article with interesting info about Peptide antibiotics! Thats a new term to me !

peptide antibiotics not only killed the bacterium which produces the toxin, but it also bound to the toxin preventing the damage the endotoxin produces. This is a promising new venue for research

[Trudi]

@Suzy wrote:

So Peptide antibiotics clean the junk left behind when the buggers are dead…..would this mean no herxing from die off?

Suzy–
That would be WONDERFUL!! I’m going to read up on peptide antibiotics now 🙂 .
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

@Suzy wrote:

So Peptide antibiotics clean the junk left behind when the buggers are dead…..would this mean no herxing from die off?

Hi Suzy,

Have been loving reading all the research you and Trudi have been posting. Certainly does sound like these peptide abx have amazing potential for providing this dual action. Of the ones I’ve found thus far, none seem to be available for widespread human use yet and seem to still be in R & D stages. In your researches, you may find more. Here’s one that you both might find interesting in light of the recent leech thread:

http://en.wikipedia.org/wiki/Hydramacin-1

“Hydramacin-1 is different from any other antibacterial currently known, except for two proteins found in leeches. The researchers propose placing hydramacin-1 and the proteins from the leech in a newly designated protein family called the macins.”

The following info is pretty jaw-dropping! 😮 If what is being published is based on sound scientific evidence, these peptide abx may turn out to be effective, not only for bacteria, but fungus and even cancer and AI diseases (and immune-modulation). So, why aren’t these being given more air time? Too new? Too expensive? Too…what? For these to become instantly available to the public for so many diseases, infectious or otherwise, one has to wonder why the scientific and medical communities aren’t making more noise about them. I have a few theories, as I’m sure you will have, too. 😉

http://en.wikipedia.org/wiki/Antimicrobial_peptides

“Antimicrobial peptides have been demonstrated to kill Gram negative and Gram positive bacteria (including strains that are resistant to conventional antibiotics), mycobacteria (including Mycobacterium tuberculosis), enveloped viruses, fungi and even transformed or cancerous cells. Unlike the majority of conventional antibiotics it appears as though antimicrobial peptides may also have the ability to enhance immunity by functioning as immunomodulators.”

Trudi, thanks for sharing this info. I’d read a couple years ago about Turn The Corner Foundation helping to fund this research, which was being hailed at the time as new hope for chronic Lymies. I think what concerns me, as a patient of chronic Lyme, is that when/if it does attain FDA approval (assuming that chronic Lyme is acknowledged by the FDA and the therapy considered in this context), whether the therapy will then be approved by insurance companies (as chronic Lyme isn’t acknowledged) and, if not, if the therapy will be affordable to all. Years of R & D go into new drug therapies and my guess is that the original patented version will be pretty expensive. Also, would the therapy be a one-off therapy, require therapy in a series or for life? In the following article, the therapy is hoped to provide “a step towards a cure” for chronic Lyme. But…and it’s a big BUT…big pharma ain’t gonna like one or a group of independent researchers holding patents on therapies such as this. Vilification of independent researchers happens (e.g. Burzynski)…let’s hope not.

http://www.viralgenetics.com/investors/pr_031809.php

Peptide therapy as a standalone therapy may just be palliative…binding to or altering microbial toxins that drive the inflammatory process, but not targeting the infection itself. This is what was bugging me about the peptide shots…palliative, yes, but not a cure and expensive, too. Now, if there are peptide antibiotics that could do both things…what a discovery 💡 ❗

[Trudi]

Hi Maz–

I’m exhausted! There is so much information on peptides out there 😮 . Honestly, outside of here, I never really gave them much thought. There is actually going to be a Peptide Conference next month–

http://www.avakado.eu/dev/Events/Peptide/Conference/2012?gclid=CKG0oMug-64CFVQBQAodzDpZzA

Scanning what was being presented, I came across this and immediately thought about you:

11:00-11:40 Cell-penetrating peptide delivery of oligonucleotides for treatment of Duchenne muscular dystrophy
Dr Michael Gait

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Suzy]

This is all so fascinating…Yes Maz this is where I was heading with my thoughts also.

Now, if there are peptide antibiotics that could do both things…what a discovery

I just have to get more time to wrap my busy mind around it. (Mom is in Hosp (finally gettin better) Blueberries need pickin, helping sons college GF write paper and presentation, other sons senior prom, Grand Daugh needs iron on graphics printed for project, and my mini aussie had an allergic reaction to something and has chipmunk cheeks and swollen itchy eyes (miserable) Aside from my mom and dog, everybody just needs to get back to their thing so I can get back the solitude of my research world. (kidding) I will have more time soon!

I thank you both for the links… I will add when I have something significant !!

Suzy

[Lynne G.SD]

This was just posted on the Rheumatic.org site .

FYI, El

_____

From: LymeInfo@yahoogroups.com [mailto:LymeInfo@yahoogroups.com] On Behalf
Of Rick Laferriere
Sent: Monday, March 26, 2012 8:38 AM
To: LymeInfo@yahoogroups.com
Subject: [LymeInfo] Lyme disease outbreak [AU]

Video (13:38) features Dr. Joseph Burrascano, clips from
“Under Our Skin, and Australian tennis champion Sam Stosur.

– Rick

– –

Lyme disease outbreak
By guest reporter Monique Wright
Sunday Night, Seven Network, Pyrmont, New South Wales, Australia

March 25, 2012
http://au.news.yahoo.com/sunday-night/features/article/-/13237505/lyme-disea
se-outbreak/
or http://goo.gl/0Ed2Y

Off the eastern coast of the United States, there lies a
small and mysterious island which may unlock the key as to
why hundreds of thousands of people are falling ill. There
is growing evidence an outbreak with massive consequences
has escaped from here, and in this special Sunday Night
investigation, we look at the illness that’s infecting more
than 225,000 Americans every year, with thousands more in
Australia. Yet the Australian government refuses to admit
the outbreak has reached our shores. As we uncover, there is
a secret US government research facility on this island – a
facility where highly contagious and deadly viruses were
used in experiments and stored away from the mainland. Many
believe the outbreak of the world’s fastest growing
infectious disease has its origins on the island, and it’s
now spreading across the globe.

Watch video, read a transcript and comments:
http://goo.gl/0Ed2Y

Contact Seven Network:
http://help.yahoo.com/l/au/yahoo7/tv/basics/tvcontactchan7.html

[Non-text portions of this message have been removed]

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[Maz]

Hi Lynne,

I think the link got messed up in the re-post from the Lyme advocacy groups. Here is the direct link to watch this Australian news coverage on Lyme disease:

http://au.news.yahoo.com/sunday-night/features/article/-/13237505/lyme-disease-outbreak/

or Tiny URL:

http://goo.gl/0Ed2Y

And the controversy that exists here in the US, in Canada, in UK, and other nations, worldwide, now heats up in Auz, eh?

The “Plum Island Conspiracy” re: genetically modifying and manipulating borreliosis to create a super-bug to disable populations in biological warfare, and that this bug crept out of the testing facility on the backs of birds to the town of Lyme, CT, has been around for a couple decades and is re-hashed in the media all the time. Quite a bit of info can be found online about this on various conspiracy websites – even Jesse Ventura recently covered this topic on his Conspiracy Theories show.

This is just my humble opinion, but I think it does the Lyme community a disservice that the media focuses on the conspiracy side of this horrendous disease, because attention is drawn away from the critical matter at hand…that people are sick and desperately need help from physicians who will actually believe their constellation of symptoms. Chronic Lyme patients are already labeled as crazy whackos by a medical community that denies the disease exists. By perpetuating the whole conspiracy angle, it really just makes it harder for these patients to get appropriate treatment, because sick folk then go to their GP, say they saw the show and want treatment. In some ways, it’s too bad this angle has now filtered down to Australia, which although serving to draw attention to the plight of these people, it’s highly sensationalistic, and naturally adds to the stigma that they’re a bit nutty. I honestly wouldn’t be surprised if this angle was fed to the media by “the powers that be” that want the Lyme community to look like a bunch of nut-jobs.

This is one topic area that chronic Lyme advocacy groups should steer away from in order to establish credibility. No “conspiracy theory” has ever been proven, which is why conspiracies tend to remain as “theories.” It’s sort of a “where attention goes, energy flows” type of situation….if everyone focuses on chronic Lyme being an “international conspiracy,” then very few credible researchers will want to invest in studying such a medically controversial disease only to get labeled as whackos, themselves. Good old Barry Marshall (an Australian) actually infected himself to prove that most stomach ulcers were caused by Helicobacter Pylori, but he is pretty much the exception to the rule.

Let’s hope that ongoing conspiracy theorists don’t delay much needed research and drug development for chronic Lymies…this new targeted peptide drug from Viral Genetics may help a lot of people who suffer from the inflammatory sequalae of chronic Lyme, but it still needs to be acknowledged as a chronic persistent infection, otherwise it will be just treating the inflammation and not the infections driving it.

[A Friend]

@Trudi wrote:

@Suzy wrote:

I might be wrong but this seems similiar to the peptide therapy that Jamminhealth has been posting links to on here from another board.

Suzy–
I thought the very same thing. I will have to do a little more in-depth research, but this looks promising. Just did a quick search to learn some more about peptides–here is one of the articles that caught my eye–
http://www.livestrong.com/article/266917-what-are-the-benefits-of-peptides/

There might be a connection here. My ND just recently put me on a therapeutic dose of Vitamine B6–100mg a day. I read up a lot on it when I checked into Vitamin B6 therapy for my husband’s carpal tunnel symptoms. B6 is so important for so many bodily functions, I was amazed!! Anyway, my OATS (organic acid test) showed that I am very low in B6 and so my doctor said to see if it makes a difference. The reason why I bring this up is there is a real relation between B6, proteins, and amino acids. In the book, Vitamin B6 Therapy by Dr. John Ellis, he calls B6 the “protein vitamin”–the nutrient without which protein cannot be properly utilized. So my lack of B6 could perhaps dominoe into a lack of, say, peptides?

Here is an article which describes the connection between amino acids and B6:
http://www.livestrong.com/article/495901-amino-acid-vitamin-b6/

Trying to connect some dots, since there is a connection between peptides and amino acids, I wonder what part of my being so low in B6 negatively impacts my life. Peptide injections have helped the woman mentioned in the other thread https://www.roadback.org/forum/viewtopic.php?f=1&t=7041 for pain management. What if her body is not metabolizing her foods properly eventually causing a defiticiency in peptides? I’m thinking out loud here, but this is definitely where my research is leading me.

I’ve only been on the therapeutic dose of B6 for 2 weeks. Without doubt it has been helping me. I also started juicing at the end of January so I’m sure that has helped me, also.

Any thoughts on my rambling–
Trudi

Trudi, if you do a search in the little search window next to General Discussion, using the words “carpal tunnel” or “Dr Ellis”, you should also find a lengthy paper I posted several years ago (if it wasn’t lost when our RBFBB web site lost posts at one time. One thing to add here is that B-6 is very necessary, but when single, isolated B vitamins are taken, we should always take an additional complete B-complex vitamin, as all of them are needed together to serve as co-enzymes for the body’s metabolic system.

Also, forgotten who wrote/quoted links on peptides, but in much reading of research done over a full 2-year period relating to this subject, we need supplements/foods based on natural and/or food substances, as our genes need these natural bases for healing and repair. If you go to LPI (Linus Pauling Institute) and read under LPI Micronutrient Research (forgotten the exact name of the section), you can find statements relating to almost any condition, and there is a search window in the left pane of each page to do further searches, both on that site and out of the site. (It really helps with our education.) Also, in Dr. Linus Pauling’s book which I first came across in my younger son’s box of books in January 2012, in the books Dr. Pauling tells about many dire diagnoses (even Downs Syndrome), a child’s IQ was able to improve drastically enough that he became able to function at a much higher level. I found Dr. Pauling’s book a real eyeopener, but the beauty of his book for myself is that the index in the back I can go to and see the page numbers of topics I’m interested in. When I see what has already been done in some areas, then I usually follow up with searches to learn what has been done since that time. I always thought of myself as strictly a liberal arts girl until the last number of years. Since that time, it is scientific research that I’ve developed a real passion for… finding answers for medical problems is more like it, I guess. In my opinion, too much of our research dollars go into pharmaceutical medication, which like Dr. Pauling wrote is often not natural to the body, and to repair, etc. the body needs what it was made to use.

AF

[Author]

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