Well, the good news is, there IS more research and awareness of Lyme since my struggle with it began:


For instance in 2001 the NIH says long term antibiotics does NOT help Chronic Lyme - of course now we know that Lyme wreaks havoc with the endocrine system...
http://www.nlm.nih.gov/databases/alerts/lyme.html

Now, there's new research (at least):
"On August 18, 2013, the Centers for Disease Control and Prevention (CDC) announced its ten-fold increased prevalence estimate of Lyme disease, from 30,000 new infections per year in the U.S. to a preliminary new estimate of 300,000."
http://psychiatry.stanford.edu/research/lyme.html

And this:
http://www.massgeneral.org/rheumatology/services/treatmentprograms.aspx?id=1551

Just a few years ago "professionals" actually believed that Lyme was "limited" to CT. Now, I ask you how that's possible when Deer Migration routes are long indeed. Deer do not respect state boundaries...nor do other mammals or birds. So, that's something.

As usual the US is slow to react. Lyme has been alive and well in Europe for a good long while:
http://www.lymeneteurope.org/news/

And, back when I was dealing with it- I was told the only way to get Lyme is from a deer tick- well, now we know that's not true at all (as I already knew - ugh):

http://news.nationalgeographic.com/news/2014/02/140228-lyme-disease-borrelia-burgdorferi-deer-tick-science/

And then there's this: "t's also unknown how many people have died because of Lyme." Well, I can tell you why that is - I know someone who spent many years studying this disease. He uncovered the reason behind it - most Chronic Lyme patients die from heart failure or what looks like "heart block". We now have a name for it: Lyme carditis. So, what actually kills a chronic lyme patient, as seen thru the eyes of the attending physician at the time of death, is "heart disease" or "meningitis", so that's what's listed on the death certificate. When, in fact, the origin of the problem began with lyme disease.
At least SOME health departments are attempting to track lyme infection rates....which may lead to more factual death rates. Which means, the scope of the problem may actually come into focus for those who need numbers to back their theories (all researchers). So THAT's progress.

And, we don't have to fight with doctors about whether or not we have a deer population in our area of infection because it's transmitted by ANY mammal or bird that can carry a tick to your area
http://www.caryinstitute.org/science-program/research-projects/lyme-disease

...and now, drumroll please, it's sexually transmitted:
http://lymedisease.org/news/lyme_disease_views/lyme-sexual-transmission.html

I was continually dismissed as "not having lyme" despite a positive test(s) because I lived "In the South"...well now we know (as I did then) location really doesn't matter - it's everywhere:
http://discovermagazine.com/2013/dec/14-southern-gothic

Continuing post...

And, Lyme Disease is older than the human race:

http://oregonstate.edu/ua/ncs/archives/2014/may/amber-discovery-indicates-lyme-disease-older-human-race

From my battles with it, I can tell you this, it DOES wreak havoc with your endocrine system (and every other part of your body), but IF you are diagnosed AND treated with THREE weeks of Antibiotics (Doxycycline is recommended) WITHIN SIX MONTHS OF INFECTIONS then you have an excellent chance of recovering completely and your immunity to that particular strain will last a life-time (but there's several strains, so you still have to be extra careful not to get bitten by ANY tick):

http://www.upenn.edu/pennnews/news/strain-specific-lyme-disease-immunity-lasts-years-penn-research-finds

However, 10-20% of those infected AND treated for Lyme WITHIN the six month window may have lingering symptoms for months:
http://www.cdc.gov/lyme/postlds/

Oh, and if you escape Lyme, well there's a good chance you might get one of these nasty buggers:
http://www.aldf.com/majorTick.shtml

And if you're doubly unlucky, you could have lyme and one ore more of those nasty things TOGETHER AT THE SAME TIME. Think: Hell on Earth.


Now on to the rest of us: Those who were NOT lucky enough to be diagnosed and treated within a six month window of infection:

SOME doctors who are familiar with Lyme and were on the fore-front of the lyme battle (and it IS a battle) have been threated, had their licenses revoked, and sued by other doctors because they chose to treat chronic lyme patients (patients who never get over it). The recommended course of treatment varies from patient to patient, but some patients are treated with antibiotics for years. It has it's risks and a downside, but compared to the horror inflicted by lyme and the multiple coinfections that's like telling a cancer patient they can't have morphine because they might get addicted, IMHO. I chose to accept long term antibiotics for 2 and 1/2 years administered thru a shunt. It was no picnic. Would I do it again? Yup.

So, if you find a doctor (LLMD) who is willing to treat you: DO NOT SHARE HIS/HER NAME ON THE INTERNET!

Here's what will happen if you do:
https://www.youtube.com/watch?v=28Usn6kxgpI#t=11

http://www.poughkeepsiejournal.com/story/news/health/lyme-disease/2014/03/20/lyme-disease-antibiotics/6646701/

http://vtdigger.org/2013/04/03/lawmakers-hear-conflicting-testimony-on-need-for-lyme-disease-treatment-legislation/

BTW: The Legislation mentioned above DID pass the House (US)
http://capecod.wickedlocal.com/article/20140923/News/140928643
Now, if it can only pass the Senate (write your Senators!)

This is what can happen if you don't catch it in six months' time:
http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/?_php=true&_type=blogs&_r=0

And, thus, why some of us needed long term antibiotics (despite the debate)

And this is how heated the debate gets (and literally costs people their careers):
http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/?_php=true&_type=blogs&_r=0

http://www.huffingtonpost.com/suzy-cohen-rph/lyme-disease_b_3697817.html

And yes, Igenix WAS investigated, but no wrong-doing was found.
http://www.nytimes.com/2005/08/23/health/policy/23lyme.html?pagewanted=all

http://www.abc.net.au/radionational/linkableblob/4675274/data/testing---written-reponse-from-igenex-data.pdf

http://www.patriotledger.com/article/20140925/BLOGS/309259955/12334/NEWS

See what a fight it is to get treatment?!

PS Note that they refer in each study to long term antibiotics as 2-4 months. I had 2.5 YEARS. Ugh.

http://www.patriotledger.com/article/20140925/BLOGS/309259955/12334/NEWS

The good news is: NOW there are more studies:
Several recent studies suggest that B. burgdorferi may persist in animals after antibiotic therapy. In one study, NIAID-supported scientists found that remnants of B. burgdorferi remained in mice after antibiotic treatment (J Clin Invest 122(7):2652-60, 2012). Another team of NIAID-supported investigators found that intact B. burgdorferi persist in nonhuman primates after antibiotic treatment. It was not possible to culture these bacteria and it is not clear whether they are infectious. (PLoS One 7(1): e29914, 2012). Additional research is needed and continues to be supported by NIAID to learn more about persistent infection in animal models and its potential implication for human disease."

Cite:
http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

I'm going to list some of those studies here (get ready for the blast) but I want to say one more thing: THERE ARE charlatains out there who will take advantage of you. They SHOULD be banned from practicing - one guy in Italy was charging 30 grand for treatments that turned out to be little more than rat poison. So, again, let the buyer/patient beware.

RESEARCH BLAST:

http://www.lymeresearchalliance.org/research_new_articles.html

http://www.lymeneteurope.org/news/

http://www.ncbi.nlm.nih.gov/pubmed/19008771?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/19571749?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

http://www.ncbi.nlm.nih.gov/pubmed/20382722

http://www.ncbi.nlm.nih.gov/pubmed/21484219

http://www.ncbi.nlm.nih.gov/pubmed/21173795

Clinical Trials: (WOW)
http://www.clinicaltrials.gov/ct2/results?term=lyme

http://www.ncbi.nlm.nih.gov/pubmed/21778908

http://www.aldf.com/pdf/Biodiversity_of_Borrelia_Strains_by_Schwartz_and_Wormser-1.pdf

http://www.aldf.com/pdf/Lancet_Seminar_on_Lyme_Borreliosis_2011.pdf

http://www.aldf.com/Amber_Theory_of_LD.pdf

http://www.aldf.com/pdf/Critical_analysis_of_Embers_work_VBZD_paper.pdf

http://www.aldf.com/pdf/Bockenstedt_persister_paper_JCI.pdf

http://www.ncbi.nlm.nih.gov/pubmed/23044924

http://www.ncbi.nlm.nih.gov/pubmed/23042964

http://www.nejm.org/doi/pdf/10.1056/NEJMoa1114362

It's a persistant little bugger:
http://jcm.asm.org/content/early/2012/12/20/JCM.02785-12.abstract?sid=a4ff3d1a-5c8c-4a91-bfd5-cb79f37c52c7

Vaccination?
http://www.ncbi.nlm.nih.gov/pubmed/23428088

http://www.aldf.com/pdf/Common_Misconceptions_about_LD_AJMed_article_2013-2.pdf

http://www.ncbi.nlm.nih.gov/pubmed/23666548

http://www.ncbi.nlm.nih.gov/pubmed/23980719

http://www.ncbi.nlm.nih.gov/pubmed/24157855

https://www.ncbi.nlm.nih.gov/pubmed/24365431

https://www.ncbi.nlm.nih.gov/pubmed/24421042

https://www.ncbi.nlm.nih.gov/pubmed/24215678

https://www.ncbi.nlm.nih.gov/pubmed/24523212

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4036060/pdf/fcimb-04-00069.pdf


Note everyone who gets infected gets long term lyme, K?
But now, they may be close to proving why/how/who gest long term lyme and who does NOT:

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0093243

Long Term Antibiotics and Why
http://cid.oxfordjournals.org/content/45/2/149.full



Please Please contact your Senator:
http://capecod.wickedlocal.com/article/20140923/News/140928643

One more time: Please contact your US Senator:

http://capecod.wickedlocal.com/article/20140923/News/140928643

And this Virus is also tick borne:

http://newyork.cbslocal.com/2014/06/01/deadly-new-tick-borne-illness-the-heartland-virus-is-on-the-rise/

I have:

Lyme
Erhrlichiosis (sp?)
Anaplasmosis

Yay! Let the fun begin!

Oh, and it is Neurological Lyme.

Which I guess makes sense since my symptoms are: weakness, fatigue, severe cognitive dysfunction, anxiety/panic attacks.

Not to mention cold intolerance and hair loss.

http://girlonamission.hubpages.com/hub/Lyme-disease-misdiagnosed-mistreated


Simple, but good.

Some girls have all the luck! ;)

MB, I am absolutely stunned by your knowledge and research on this hideous epidemic, and of course extremely grateful for this compendium of information. Extreme gratitude is in order as always.

UG, I feel so badly for you for the obvious reasons because we know you have more battles to conquer in the future. But all of us need to be grateful to you for bringing this Lyme issue to the forefront as a contributing cause of hypothyroid, hypoadrenal and apparently a bloody long list of other life threatening ailments. I am so sorry you were the guinea pig here but rest assured that your coming forth will save many others from your long term trials and suffering. Big hug.

cd, Yeah, its part of our lives now, no matter where you live or what your lifestyle. I truly hope you have been successful in catching and treating your infection before it takes over. Its seems to be permeating the media finally. Hopefully this forum can also cause awareness with emerging personal information and sharing of experiences. Daily Strength in numbers.

MB.......you truly are amazing with your research and knowledge!

GageL.....thanks for your kind words. :)

Here's another article I found.

http://well.blogs.nytimes.com/2013/07/08/when-lyme-disease-lasts-and-lasts/?_php=true&_type=blogs&_php=true&_type=blogs&_r=1

There's never a good time to get ANY of those tick-borne diseases, but it's not as much of a fight to get treatment as it was 10-15 years ago, so there's that. However, that being said, I wouldn't wish Lyme on my worst enemy. And certainly not a coinfection!

It'll be an uphill climb, UG, but you got this!

PS Glad to share this hard-won info (most of it was saved in my browser - lol) Just sorry I had to go thru that (it was AWFUL).

utahgal - you can do this...you can. Just so you know, there are others who've beaten neurological lyme - one of my favorite authors, Amy Tan, dealt with it - read more here:

https://www.youtube.com/watch?v=YMVbh03kAbY

https://www.amytan.net/lyme-disease.html

http://www.lymeneteurope.org/forum/viewtopic.php?f=10&t=1412

And, sister, in 1999 - getting diagnosis for Lyme was next to impossible! Amy and others like her...well, I owe a great deal to them.

Mayo Clinic is not to be trusted in any way. Just read their guidelines on almost any disease. See what they say about adrenal disease for instance. They are far behind the world in general. Dont listen to Mayo!

MB

Holy Smokes!! What an insanely huge amount of *excellent* research you've shared!! Thanks SO much!!

I'm sorry for the reason you had to research, though :(

Lyme is insidious....and Amy Tan describes the Lyme situation in quite the accurate nutshell:

"I now know the greatest harm borrelia has caused. It is ignorance. Lyme disease is more prevalent than most people think. It is more difficult to diagnose than most doctors think."

Amy Tan gives us the advice to be aware and to be informed. YES!!!!

The ignorance of doctors is what keeps people sick. We see it constantly on here with thyroid disease.....and I'm realizing it applies to any disease. Educated patients have the best chance at wellness.

Doctors should *not* be able to keep their prescription pads unless they participate in continuing education.

I work in the aerospace and defense industry. If I didn't stay current with the changes in product and quality specifications, I couldn't stay in business.

Doctors are entrusted with people's lives.....yet a large number of them fail us due to ignorance. I consider this completely unacceptable.

Thank goodness for forward-thinking doctors who work at staying current in their fields.

AMEN CD.

Even dental hygenests must complete continuing education. So do DDS's. Why not MDs? They' should NEVER be exempted from such important events as education - and I vote that NONE of them can be hosted by pharmaceutical companies,etc.

And glad I could help...and that my overloaded lyme folder on my browser could help :)