A new %$X(! Lyme Disease coming your way

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couchmaster

climber
pdx
Topic Author's Original Post - Jan 26, 2013 - 10:41am PT
As if you didn't have too much to worry about. The last line "he is reviewing old cases and has discovered the strain in other patients who were undiagnosed." makes me think of Lynne Leichtfuss husband Dan. She's mentioned several times on this board that she felt he had Lyme Disease but passed away with it being as yet undiagnosed.

http://newyork.cbslocal.com/2013/01/25/n-j-woman-becomes-first-in-u-s-diagnosed-with-new-deer-tick-disease/

"N.J. Woman Becomes First In U.S. Diagnosed With New Deer Tick Disease
Same Species That Causes Lyme Infected 81-Year-Old With Something Else
January 25, 2013 9:44 PM

FLEMINGTON, N.J. (CBSNewYork) — A New Jersey woman is lucky to be alive after catching a mysterious illness from a tick bite.

Anna Felix, 81, of Kingwood Township, said she feared her lymphoma had returned or she might have dementia when she started getting weak and confused and lost 30 pounds.

“I remember I couldn’t eat too well. And I started needing help to walk,” Felix told CBS 2’s Hazel Sanchez on Friday.

Initial tests were inconclusive, and although she showed symptoms of Lyme disease, Felix tested negative. Lab technicians at Hunterdon Medical Center made a breakthrough discovery when they examined her spinal fluid and found an unusual strain of bacteria they had never seen before.

“It was really spectacular. We knew we were on to something really big and that she would be treated and cured,” lab tech Amy Kurynow said.

Doctor Joseph Gugliotta confirmed it was the bacteria borrelia miyamotoi, a new disease transmitted by the same deer tick that causes Lyme disease. Felix is the first American case of this new tick-transmitted disease.

“Once I verified the organisms were there in the second spinal tap she was treated with a high dose of antibiotics and by five to seven days we were seeing improvement already,” Dr. Gugliotta said.

Felix said she likely was bitten by a tick on her farm. She’s since made a full recovery, and said she’s grateful for the lab’s life-saving discovery.

“It is amazing, and I hope that through this other people will get help, too,” Felix said.

Because of the newly discovered bacteria, Dr. Gugliotta said he is reviewing old cases and has discovered the strain in other patients who were undiagnosed."
happiegrrrl

Trad climber
www.climbaddictdesigns.com
Jan 26, 2013 - 11:10am PT
This is the good side of medicine - research and helping/saving people's lives.

On the other hand, it will be interesting to find out how prevalent this version of Lyme is, if on the rise, and such. It just occurred to me that we might consider a "loaded" tick bite as being akin to being bitten by a poisonous spider or bug, or ingesting a poisonous plant.

Is this accurate, or not, since not ALL ticks carry Lyme. They get the bacteria from eating infected material, but I guess it doesn't kick their ass. Where does the very initial strain of Lyme come from? How does it get INTO to deer that also carry it?
locker

Social climber
state of Kumbaya...
Jan 26, 2013 - 11:16am PT


"How does it get INTO to deer that also carry it?"...



If a Deer has it and bites you, can you catch it???...

Lynne Leichtfuss

Sport climber
moving thru
Jan 26, 2013 - 10:59pm PT
Oh couchmaster, thanks for the Thread and mentioning my incredible husband, Dan, who was finally defeated by Lyme. Note I did not use the word victim because Dan never was....he fought with all his strength and finally lost.

So many have contacted me over the past 5 years re: Lyme. I try to give them the best info I can. We found a fantastic Dr. in Thousand Oaks, CA. But Dan's body was already to far spent. Please feel free anyone to contact me re: the disease and resources etc. My children were a great help and garnered a huge amount of facts, resources and wisdom.

If anyone wants this physicians name I heartily recommend him. Just ask on this thread and I'll post it.

Lyme disease is mega complicated and tough to fight....tough to live with and endure. Prayers to all of you out there feeling its effects. Whatever I can do I will. I love each of you and will fight this with you. Lynnie
bluering

Trad climber
Santa Clara, CA
Jan 26, 2013 - 11:57pm PT
I have mucho to say but let's start with;

I HATE F*#KING DEER TICKS!!!44##!^7

Ugh...I hate them.

And I 'm a really nice guy. Just sayin'
bluering

Trad climber
Santa Clara, CA
Jan 27, 2013 - 12:01am PT
Be good, Lynne! God bless ya!

see ya around.
couchmaster

climber
pdx
Topic Author's Reply - Jan 27, 2013 - 12:28am PT
Thanks Lynne, if you want to put any knowledge you have up here for anyone googling it, I'm sure it would be appreciated.

Question, how this isn't too intrusive, I apologize if it is: did you know for certain that Dan had Lyme, or was it because all of the symptoms were that he did, but he never tested positive for it?

All the best:
Michelle

Trad climber
Toshi's Station, picking up power converters.
Jan 27, 2013 - 12:29am PT
Well, now I feel like an ass.
Reilly

Mountain climber
The Other Monrovia- CA
Jan 27, 2013 - 01:42am PT
Nude hiking is the only safe hiking.
Lynne Leichtfuss

Sport climber
moving thru
Jan 27, 2013 - 02:01pm PT
couchmaster,

A Lyme specialist in Thousand Oaks, CA confirmed that Dan had the disease and treated him with IV Rocephin, but he warned Dan and I that it was most likely to late. He was the only person that prepared us for what we might expect and I am so grateful he did. Facing reality can be more than difficult, but often necessary.

I refer everyone to the above Dr. He is an Internist, but has made Lyme diagnosis and treatment a specialty. He even has a nurse in his office just for Lyme patients. We lived 3 hours away and no matter what if we called Dr. Gonzales made time for us in his schedule.

Dr. Miguel A. Gonzales
227 Janss Rd.
Thousand Oaks, CA
805-497-7508

Lyme is not really rare; just highly under diagnosed.
Shortly after Dan went to heaven, the CA State Dept. of Public Health sent out a bulletin to all physicians stating that Lyme was a threat in CA and they needed to get up to speed on the disease.

Dan had a weakened heart and lungs from radiation therapy for Hodgkins Disease when he was 30 otherwise he may have survived the Lyme Disease.
Dan was a scientist and not only studied Lyme but kept a journal about what he was experiencing (enduring). I made copies of it and gave it to his main Dr. at the hospital Dan eventually died in. I had the Dr. include it all in Dan's chart. I don't know what I hoped to accomplish by that, but it made me feel better.

Thanks for a your kind and thoughtful words. Dan died 5 years ago this past December 29th and sometimes it still feels like yesterday.





couchmaster

climber
pdx
Topic Author's Reply - Jul 3, 2013 - 09:31am PT
It's sad that an otherwise treatable disease gets missed and wrecks havok Lynne.



Todays newz, it's spreading fast: THERE ARE AN ESTIMATED 100,000 PEOPLE IN NY NOW INFECTED BY THE NEW TICK DISEASE. IT'S HEADING YOUR WAY AND YOU WON'T GET A RASK OR MARK AS A WARNING THAT YOU WERE BIT AND INFECTED.

We're all out there where these little puckers play and work, keep your eyes and ears open for you and your buddies who may think they have the flu, you won't test positive for Lyme if you have this.


"NEW YORK (CBSNewYork) — A new disease spread by deer ticks has already infected 100,000 New Yorkers since the state first started keeping track.

As CBS 2’s Dr. Max Gomez reported, the new deer tick-borne illness resembles Lyme disease, but is a different malady altogether – and it could be even worse.

The common deer tick is capable of spreading dangerous germs into the human bloodstream with its bite. However, Lyme disease is one of many diseases that ticks carry.

The latest disease is related to Lyme, and an infected person will suffer similar symptoms.

“Patients with this illness will develop, perhaps, fever, headache, flu-like symptoms, muscle pains — so they’ll have typical Lyme-like flu symptoms in the spring, summer, early fall,” said Dr. Brian Fallon of Columbia University. “But most of them will not develop the typical rash that you see with Lyme disease.”

Fallon, a renowned expert on Lyme disease at the New York Psychiatric Institute, said the importance of the new bacterium – called Borrelia miyamotoi — is that it might explain cases of what looked like chronic Lyme disease, but did not test positive for Lyme.

“The problem is that the diagnosis is going to be missed, because doctors aren’t going to think about Borrelia miyamotoi because they don’t know about it. And number two, if they test for Lyme disease, it will test negative, and the rash won’t be there,” Fallon said. “So they are not going to treat with the antibiotics, so the patient will have an infection staying in their system longer than it should.

While there is no test yet for the germ, the good news is that it appears the same antibiotic that kills Lyme disease also works – if it is given in the right doses and started early in the infection.

Remember, it takes a tick bite to get Lyme disease or the new bug, and the tick usually has to feed on your blood for at least 24 hours.

If you have been outdoors, have someone else do a full body check, Gomez advised. Ticks are small – only about the size of a sesame seed."

The first New Yorker flying out to Yos that has one in his clothes or on him/her and blam, next thing ya know, Werner is a host. Then mama drops off, full, and lays eggs.
HighTraverse

Trad climber
Bay Area
Jul 3, 2013 - 11:34am PT
Just when some thought we were nearly out of the woods in understanding Lyme disease!
Patrick Sawyer

climber
Originally California now Ireland
Jul 3, 2013 - 12:30pm PT
Couchmaster, good thread.
Toker Villain

Big Wall climber
Toquerville, Utah
Jul 3, 2013 - 01:25pm PT
They are starting to think that many cases of SIDS are a result of toxoplasmosis from people letting their cats run loose.



In the natural world there are an almost infinite number of diseases, agents, pathogens, vectors, etc.

They are all always competing and,.... nobody gets out alive.
Brandon-

climber
The Granite State.
Jul 3, 2013 - 01:32pm PT
Deer ticks actually can carry four diseases. One is Lyme and the other three are similar.

My good friend was just diagnosed with Lyme on Monday.
Don Paul

Big Wall climber
Colombia, South America
Jul 3, 2013 - 01:41pm PT
It's a spirochete, related to Lyme. I had a client with Lyme who thinks that Lyme was a bio warfare project that escaped from Plum Island, just off the coast of Lyme CT. I forget the details but a spirochete has an inside and an outside part. The outside somehow enabled it to live in the human body, then they put different parts inside, like a bacteria payload, as part of their research. Looks like it has mutated on its own now.
Brandon-

climber
The Granite State.
Jul 3, 2013 - 01:47pm PT
Another important thing is that there is a general medical consensus stating that a deer tick needs to have been feeding on you for 36 hours before it can transmit these diseases.

If you live in tick country, check yourself daily!!!

In addition to my friend, my grandma found a deer tick and bullseye rash on her a couple of weeks ago. She hasn't shown any symptoms of Lyme, and testing is inaccurate before 4-6 weeks of infection so we are playing the waiting game.
crusher

climber
Santa Monica, CA
Jul 3, 2013 - 04:29pm PT
There's an interesting article about Lyme (which I haven't finished reading yet so can't comment on) in The New Yorker, July 1st issue - here is a link (if this doesn't work go to their website and search "Lyme Disease"):

http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter?currentPage=all

Cragman

Trad climber
June Lake, California....via the Damascus Road
Jul 3, 2013 - 04:47pm PT
I began coming down with symptoms in the Fall summer of 2005...symptoms I thought pointed to Lyme.

I immediately started getting blood tests...all came up negative. No doctor had ANY answers for me.

In January of 2006, I began researching Lyme myself on the internet..the more I searched, the more I was absolutely convinced I had Lyme. My condition worsened. Later that winter, I told my wife..."I feel so miserable, I either need a diagnosis, or I need to die...I cannot go on like this."

In April of that year, I was back to my local Dr. for more bloodwork. Interestingly, they found some markers for a possible case of Rheumatoid Arthritis. I was referred to a specialist in Carson City. I was actually crushed when she told me, "You don't have RA." I mean, at that point I wanted SOME sort of diagnosis...to know what I was fighting....ANYTHING but NOT knowing!!!!!

I gave this RA Doc all of my findings from the Web searches, then literally BEGGED her to treat me for RA. After MUCH said begging, she relented, and agreed to put me on heavy oral antibiotics, then, if needed, onto IV antibiotics.

I began taking the drugs, then told my clients I was working for at the time that I was going to take some time off. I packed up my family and went to Ecuador for a month, all the while, bombing my system with the drugs.

By the time I returned from Ecuador, I was feeling nearly back to normal again....in another month, I was done with the drugs and felt great.

I estimated that I had Lyme for just over a year. I NEVER saw a tick bite (bulls eye rash) but had been to known tick/Lyme environments shortly starting to feel symptoms.

Clearly, a brutal disease to diagnose......Lynne...bless you, my dear. Thanks for sharing about Dan.....gone from us, but in the presence of the Lord.
Seamstress

Trad climber
Yacolt, WA
Jul 3, 2013 - 05:23pm PT
My daughter had lyme disease - contracted while we lived in CT. Back then, they wouldn't even test you unless you had the bullseye rash. After removing a tick and observing uncharacteristic lethargy, I jumped up and down, to no avail. She had intermittant joint swelling thereafter, and we could always come up with a possible cause. When her knee swelled up again and we had no logical events that could cause this, we say a pediatric arthritis specialist who asked me, "Could she have contracted Lyme disease?" I told him all about the tick from 3 years earlier and the Doctor insisting that testing was no warranted. We tested her and she was positive for Lyme. 3 whole years she was undiagnosed.

She is OK but has some compromise to health. We were lucky. I refuse to ever let someone talk me out of my intuition again.
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