Progress on the horizon, finally?

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logmoss82
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Date Joined Mar 2016
Total Posts : 103
   Posted 5/5/2018 2:55 AM (GMT -6)   
I'm usually not one to get excited about anything congress does, and tend to have a pessimistic view of government as a whole especially when it comes to diseases, but just last month congress quietly released new funding directives to the NIH, the CDC and DHHS as part of the 2018 appropriations bill. This was part of the 2016 cures act, and there was actually a Tick Borne Diseases working group and congressional proceeding and testimonies that led to these directives.

Sounds kind of dry and meaningless, but this might actually get somewhere. Its complicated legislative language, but in layman's terms directives are part of congresses power of the purse. (Always follow the money). Directives are basically congresses way of making sure they control the way government agencies use federal funding and making sure there is accountability. When they make directives, they are acknowledging there is a problem and making suggestions and recommendations to federally funded agencies to fix it.

In this recent list of directives congress specifically mentions the phrase chronic lyme disease, which is one few times there has even been official government recognition of this condition. They specifically discuss persistent Lyme and inadequate treatment, saying:

" The Committee also encourages the National Library of Medicine, in coordination with NIAID, to update its terminology in line with new research to more accurately reflect the long-term effects of chronic Lyme disease."

They also address inaccurate testing and hint at lack of accountability and transparency in regards to tick diseases within the CDC. They call into question the lack of funding for Lyme disease and ask for investigations into obstacles blocking the way for more advanced testing methods.

They even acknowledge a mental health component to Tick diseases saying "Lyme disease and other tick-borne diseases are known to cause a wide range of psychiatric manifestations" and asking the National Institues for Mental Health to "review the published literature on links between tickborne disease and psychiatirc illness."

Heres a link to a really good article that sums up the findings of the senate report:

https://www.webwire.com/ViewPressRel.asp?aId=219152

And Here's a link to a text of the actual directives:


http://www.lymepatientadvocacy.org/Documents/FY2018CongressionalDirectivesforLymeDisease.pdf


These are all things Lyme patients have been talking about for years with no progress, and I think this is good news that congress is actually talking about these issues and passing directives to address them.

The CDC itself recently released a report saying tick borne infection cases more than doubled from 2004-2016, and at the end of last year, they quietly removed the IDSA guidelines from the CDC website.

Again, I know it's congress and they are known for incompetence and move very slowly but I think these are all very positive signs and may be a reason for cautious optimism. I think it's definitely a step in the right direction that the government has at least acknowledged there may be a serious problem here.

Any thoughts? Will it be more of the same, or is this perhaps a a sign of long awaited progress in diagnosing and treating chronic Lyme in the US?

Post Edited (logmoss82) : 5/5/2018 10:53:00 AM (GMT-6)


goshawk
Veteran Member


Date Joined Sep 2016
Total Posts : 2122
   Posted 5/5/2018 3:52 AM (GMT -6)   
I,m hoping for the best and hoping the tide has finally turned in our favor.

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 5/5/2018 4:56 AM (GMT -6)   
you've pasted the same link twice.

the correct link to the directives is
/tinyurl.com/FY2018LymeDirectives


i do not trust any report or committee until i see the actual commitments of funds for actual research in the field. So far they commit $20m per year for lyme disease, and most of it is not used for research.

Even if it were all used for research, do you have any idea how little that is for medical research purposes for something that complicated like a chronic disease? Especially 340000 sick per year, OFFICIAL figures, among which 20% will have this for life. That is around 70000 people every year (that is officially - real figures are probably 5x higher) most young or middle aged, we are not talking here about seniors here. Seniors generally stay in house and are less at risk. This is a disease of the outdoors so it affects the most active citizens...so double the cost for society...

It's a disgrace, Cohen, GLA and Bay Area foundations manage to get more money together than the mighty Feds. Pathetic...

Allocate $200m a year for chronic lyme research for 10 years and you will get a cure. Oh wait. For that we first need to accept there is such thing as chronic lyme. But if we CDC do that we get class sued. By all patients that were told it does not exist and they came with proof and were ignored. So let's wait 10 more years so we can retire, and then ... who cares what happens then ...

logmoss82
Regular Member


Date Joined Mar 2016
Total Posts : 103
   Posted 5/5/2018 11:21 AM (GMT -6)   
Thanks for pointing that out Mpost. You got the right link.

Anyway, I do agree with you, theres not really anything happening until money actually gets allocated, and all of these recommendations could only possibly go into effect for FY 2019, so theres a while to wait to see if anything actually gets done. But it is a first step, and the report calls on NIH to justify the differences in research funding between Lyme and less common diseases like ZIka.

Also for any real changes to occur, the CDC has to explain lying about testing and treatments for more than 20 years which isnt very likely. Since they are the scientific public health authority given domain over these diseases any real changes would have to come directly from them. Its like corrupt cops investigating their own department.

Like I said, Im pretty skeptical of any government action. Even when they recognize a problem and promise more transparency and a commitment to fix things, they still remain broken. A good example of this is Veterans Affairs.

But at least they are recognizing there is a problem here and acknowledging many of the major points Lyme patients have been making for over 20 years. This report alone may even have some legal and civil standing in courts and lawsuits. The federal government is formally expressing a belief that Lyme can be chronic, so it makes it just a little bit harder for insurance companies, for example, to deny this fact.

I think if we do have any hope for change, this will likely be the form it comes in. It will be slow and deliberate and it will have to come from within the system. Sometimes when malfeasance exists for so long it has to be specifically outlawed to prevent it from continuing.

And at least the next time an ID doctor tells you Chronic Lyme doesnt exist and the tests are accurate, at least now you can tell him that the United States Senate doesnt agree.

artermix
Veteran Member


Date Joined Aug 2016
Total Posts : 1239
   Posted 5/6/2018 8:13 AM (GMT -6)   
The CDC is trying to cover their asses. The test is accurate for the purpose they wanted to achieve, meaning excluding all people who had a certain immune function response. This is only 25% of population.
Did you test positive CDC on WB? Good. It means that your immune system responded.
You keep testing negative despite the treatments??....your immune system is a mess now from lyme toxins which is like a fungi (reason why Fluconazole works so well for some patients). But their goal was to ESCLUDE the majority of patients. Think of the lucrative possibilities of million of people around the globe with -not so sure diseases- or made up diseases (ME/CFS). It is a never ending well of profits.
Contracted lyme in 2015.
First bite untreated. Second bite treated according to CDC guidelines and within 10 hrs from bite.
April: ELISA & WB positive (2 bands)
May & June: Oreganol, Eulueothero, Magnesium and some cats claw.
July: Amoxicillin 4000 mg a day for 30 days in July 1 ended in Aug 1.
August: begins basic Buhner protocol.
September: Basic Buhner protocol + specific herbs

Sheeks175
Regular Member


Date Joined May 2016
Total Posts : 258
   Posted 5/6/2018 6:29 PM (GMT -6)   
artermix said...
The CDC is trying to cover their asses. The test is accurate for the purpose they wanted to achieve, meaning excluding all people who had a certain immune function response. This is only 25% of population.
Did you test positive CDC on WB? Good. It means that your immune system responded.
You keep testing negative despite the treatments??....your immune system is a mess now from lyme toxins which is like a fungi (reason why Fluconazole works so well for some patients). But their goal was to ESCLUDE the majority of patients. Think of the lucrative possibilities of million of people around the globe with -not so sure diseases- or made up diseases (ME/CFS). It is a never ending well of profits.


I have the arthritic knee Lyme that you say should supposedly show positive on standard Lyme tests, yet I was negative on the elisa and labcorp western blot. Why was that? Also, fluconazole kills Lyme spirochetes in the test tube. That is why it works for Lyme. It has nothing to do with lyme toxins...

Rare Squirrel
Regular Member


Date Joined May 2018
Total Posts : 38
   Posted 5/11/2018 6:08 PM (GMT -6)   
Fluconazole kills Lyme? Wait, could being on Fluconazole for 4 months before having my WB Lyme test run have affected it's outcome? I only had IgG bands 23 and 30 and IgM band 23 show up even though I have so many symptoms I completely expected a fully positive (by CDC standards) results. And if it kills Lyme than why aren't more people with Lyme taking it?

*Sigh* looks like another day spent on internet research!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 5/11/2018 6:15 PM (GMT -6)   
Rare Squirrel - Band 23 is lyme specific...it's enough to back up a clinical diagnosis.



I don't think Flucanazole is being used to treat lyme....not that I've heard/seen.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mpost
Veteran Member


Date Joined Feb 2015
Total Posts : 1522
   Posted 5/11/2018 10:09 PM (GMT -6)   
Girlie said...

I don't think Flucanazole is being used to treat lyme....not that I've heard/seen.


it is
/www.ncbi.nlm.nih.gov/m/pubmed/15337633/


zhang study says it is a persister drug
lymemd.blogspot.com/2015/12/cyst-busters-we-had-it-wrong-all-along.html?m=1

fluconazole has almost 100% bbb penetration which is rare for a lyme drug. unfortunately it is very hepato toxic, so if u take it for long time, test your liver

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 5/11/2018 11:06 PM (GMT -6)   
I think it’s still not common for it to be prescribed for Lyme treatment -

We see a lot of protocols on here - with various llmd’s - and I don’t think I’ve seen it once.

Maybe I’ve missed it


I know Dr J doesn’t or Dr R in Seattle nor the two llnds I’ve been to.
Haven’t heard Dr H using it for Lyme.

So I’m curious - how does an anti fungal kill the bacteria anyway?
Anyone know ?

How do they know that it wasn’t Candida symptoms that the participants had and that’s why the diflucan worked? They based the results on reported resolution of symptoms.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 5/11/2018 11:31:33 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 5/12/2018 12:13 AM (GMT -6)   
logmoss82:

"Also for any real changes to occur, the CDC has to explain lying about testing and treatments for more than 20 years which isnt very likely. Since they are the scientific public health authority given domain over these diseases any real changes would have to come directly from them. Its like corrupt cops investigating their own department."

Yup.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Aurora2013
Regular Member


Date Joined Jun 2017
Total Posts : 90
   Posted 5/12/2018 4:46 AM (GMT -6)   
Girlie well said! The agency responsible for protecting the well being of its citizens have and continue to deny the scope and magnitude of Lyme and friends. Sadly, it seems that change rarely occurs unless those who are in power (or family members) experience the very same illnesses and level of hardship that we all have and continue to experience. This may sound a bit cruel but these diseases are cruel and unrelenting. In the state in which I live, the majority of people that own second homes along the coast are doctors, lawyers, and heads of companies. This means that their "vacation" homes are located at ground zero and inevitably will experience (or perhaps a loved one) the devastation that these diseases inflict. I guess the nice thing about ticks is that they do not discriminate. It does not matter if you are poor or wealthy, or what your ethnicity is. Although I do not wish ill health on anyone and would rather see the cdc step up and do its job, I am doubtful this change will happen unless more dollars are devoted to research. From what I have witnessed since becoming sick, those in power will not get involved unless they too become sick. And as we know that the tick populations are thriving, it's just a matter of time before those in denial see the light.

All this said, I am hopeful that the tick borne disease committee and subcommittee's will begin to work towards resolving their differences, lose their egos and use their collective wisdom/energy towards finding a cure.

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 5/12/2018 5:13 AM (GMT -6)   
I am optimistic about these developments, even though there is still much work to be done. i am still suspect about the HHS working group, and them getting sidetracked on so many of the issues at hand, my belief is the focus needs to be testing and treatment.

it does seem this year that there is a lot of traction, and it seems closer to reality that the old barriers are starting to crumble.

i dont necessarily believe that the CDC needs to explain the shortcomings, lies, etc for the past 20 years. time and time again, policies change, especially those founded on controversy. all it takes is one thing to topple the house of cards.

dbwilco
Regular Member


Date Joined Mar 2016
Total Posts : 263
   Posted 5/12/2018 7:25 AM (GMT -6)   
girlie

SP in wilton uses fluconazole as part of his protocol, for lyme purposes...how it crosses bbb....i asked him, and the anti-fungal is just a bonus, not the reason he uses it....i do blood work every month....have taken it for months w tetra and asst other added abx, with pulsing (2 wks on 2 wks off)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32667
   Posted 5/12/2018 10:29 AM (GMT -6)   
dbwilco said...
girlie

SP in wilton uses fluconazole as part of his protocol, for lyme purposes...how it crosses bbb....i asked him, and the anti-fungal is just a bonus, not the reason he uses it....i do blood work every month....have taken it for months w tetra and asst other added abx, with pulsing (2 wks on 2 wks off)


Interesting. I do take it two days per 3 or 4 week cycle but it’s for Candida - if it wants to kill my Lyme too - I’m fine with that!!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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