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Author Topic: Newbie Learning Help Links 5/21/08
bettyg
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http://flash.lymenet.org/scripts/ultimatebb.cgi

Tree, please add the above please; thanks!

Hope you are FINALLY feeling better and like your OLD/YOUNG self again! [Big Grin] [group hug] [kiss]

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lymedad
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TreePatrol,

I was asked to post the following letter here. If you think it inappropriate, please don't hesitate to delete it, or let me know and I'll delete it.

Betty G thought other newbies might get some benefit from our story.

LymeDad

------------------------------------------------

A couple of weeks ago I read two separate posts from young people suffering from Lyme who were really struggling with convincing their families that their disease was real.

I offered to write a personal letter to their families highlighting what we have gone through as a family for the past 5+ years (my daughter suffers from Lyme and 3 co-infections).

One of the posters to whom I sent the letter has asked that I post it here in the General forum. My only reason for doing so is in the hope that someone else might benefit from our experience and be able to share our story with their family.

I've included the letter below (I deleted all the personal references from the original letter).

-------------------------------------------------

I'm not really sure where to start so I'll just write what I know.

My name is XXXXXX. I am a retired SMSgt (4 years in the Seabees, 21 years USAF), living in southern California. I'm 59 years old, a veteran of two tours in Vietnam and a Christian man with a family that is hurting.

I'm not trying to sell anything and I'm certainly not trying to get involved in anyone's family business.

I just know that my family has been through a nightmare for the past 5+ years and I thought that if I could help anyone else by simply writing a letter, I would certainly try to do so.

I hope that you will take the time to read the following and see if maybe your family is experiencing some of the same things we have.

My daughter, Nicole (28 years old), has Chronic Lyme disease. She suffers every day from pain in most of her joints and muscles.

She also gets migraines so severe that she's unable to get out of bed for days at a time. She's had flu-like symptoms so bad she's been unable to keep much on her stomach for weeks at a time.

She's experienced time where she's been unable to speak clearly and she has problems with her short term memory.

This has been going on since January 2001.

Nicole was and is a very bright, engaging young woman who is now stuck living with her parents.

She has been so ill that she was forced to move back home and that is probably the worse thing about this illness, she's just not capable of taking care of herself.

Her first family doctor diagnosed her with Fibromyalgia Syndrome, Chronic Fatigue/Chronic Pain Syndromes.

The typical treatment for these ``diseases'' was to prescribe pain medications, antidepressants and anti-anxiety medications. Of course this only treated the symptoms, not the cause.

Nicole then began the rounds of being tested by all of the specialists. For a period of more than 4 years she saw so many different doctors we've lost count.

She's been to a rheumatologist, a cardiologist, two neurologists, a psychiatrist, a psychologist and two different family doctors; you name it she's seen one.

She's had at least six MRIs of her brain, two spinal taps, so many x-rays we've lost count.

She's been to the Emergency Room of our local hospital so many times that they know her by her first name.

She's been admitted to the hospital on three separate occasions for more than a week each time.

She's had so much blood drawn that she no longer even cringes when they stick her with a needle.

It wasn't until we were referred to a doctor in northern California that we finally found out what she has.

She and I made the 9 hour drive up the coast to see this doctor. He spent more than 3 hours just talking with us. He then drew blood and had it sent to a laboratory that specializes in testing for Lyme disease.

The results were just what he predicted, she tested positive for Lyme disease and three other co-infections.

All of the bacteria in her body came from a tick bite. In fact we even remember when she was bitten.

In 1996, Nicole and several of her friends went camping in the mountains above Ojai California.

When she returned four days later, she discovered a fully engorged tick in her scalp. We didn't think much about it.

We now know what it has done to her.

Nicole has been taking several courses of oral antibiotics from late 2005 until June of 2006.

In June she had an intravenous tube placed in her arm, called a PICC line. She now infuses antibiotics through the PICC line directly into her blood system.

This IV infusion has made a world of difference.

She no longer needs her wheelchair, she is able to get out of her room for about 6 hours every day and her ability to communicate with us and her doctors has improved tremendously.

We're starting to get our child back.

I wanted to tell you that when she first became ill I thought it was just her imagination. I thought she was just being lazy.

She would call me from work and say she was just too sick to drive home. I'd go to her job and drive her to her apartment.

I wasn't very patient with her. I just didn't understand.

The cause of the pain and other neurological symptoms she goes through doesn't show up on an x-ray or in routine blood tests.

She doesn't look sick from the outside. It was an extremely rough time between her and I the first four years of her illness.

I am probably the world's biggest cynic (must be the military training).

If I couldn't see the problem, I didn't believe it existed.

How could my daughter be so sick and not have it show up on any routine blood test or x-ray.

I assumed she was either faking it or like I said, just lazy.

The real problem with this disease is that there just isn't much known about how it works in the body. In fact many doctors don't even believe it is real.

Most health insurance companies won't even cover the procedures needed to treat this nightmare.

We've had to pay for about two-thirds of her treatments out of our savings.

Let me tell you, it's been a tough ride. I've gone to almost all of her doctor's appointments over the past five years.

I've listened to them tell her nothing is wrong. I've seen the disappointment on her face, especially when she and I have had arguments about her illness.

I've not been the easiest person to get along with, in fact, at times I've been a real jerk.

Her mother and I have watched and listened when she has been so sick she can't get up off the bathroom floor for hours.

We've watched as the paramedics have come into our home to take her to the hospital.

We've watched as she has become so ill she has to have a wheelchair to even get to her doctor's appointments.

I've done all the research I can over the internet and from books.

Lyme disease is real.

I'm not sure where you and your family are with this problem. I just know it's been one of the toughest things I've ever had to face.

Well that's about it. That's our story. I hope I've been able to convey to you and your family how real this thing is.

It wasn't until I saw a difference the antibiotics have made for my daughter that I finally became convinced that she has been suffering beyond anything I could have imagined.

Maybe I just didn't want to admit I couldn't fix it, so it couldn't be real.

I have a lot of things to work out with Nicole when she is well enough. I've hurt her and I have a lot to make up for, but that's going to come.

I'm convinced we will lick this thing.

I only hope that others can read this and understand that someone else has gone through the same things as you are.

You are not alone.

If you'd like more information, one of the best sources I've found is at the LymeNet website.

I've spent many hours reading of other peoples struggles and advances on this site:

www.lymenet.org

Your family is in our prayers.

Sincerely,


LymeDad

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bettyg
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tree, i thought this would goo added around the BUT YOU LOOK SO OOD/ NO SLEEPING.

tree, thx; nd hoping youfeeling bettefr.

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bettyg
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hi tree, how are you feeling now? over that crap you got while on vacation in oct?? hope so!

just readthis about someone's bad dr. visit, igenex testing, and this poster's response was very enlightening;

not sure where you can post this, but good stuff here!


radiogirl
Frequent Contributor
Member # 9202
posted 14-12-2006 06:31 PM

Hi Panic,
I wanted to tell you that first your concerns are valid.

But science is leeps and bounds ahead of your ID doc.

What scientists learn now could be 10 to 20 years away from your doctors office.And IM not talking about big pharma scientist.Interests are different there.

If you would like to investigate a microbial basis for your condition you might be surprized to find that infection should be considered suspect number one according to some of the worlds leading scientist.

Start with www.immed.org look at the qualifications of the people associated with that organization.My panel of ID docs couldnt hold a candle to those scientists read the bios of the doctors there.

You can also go to www.roadback.org and chat on the bulletin board and speak with many who treat diseases with abx alot of those diseases people are given no hope in the traditional world and treated with chemo-like drugs and immune suppressing drugs.

On abx they go on to live normal lives.But of course the earlier the better for recovery

I am a former radio show host who had CFS/FM and treated by a panel of doctors because friends of the family were large contributors of the hospital and I was feeling so ill.One member of that family passed away yesterday and Espn has run tribute to him all day .Well deserved I might add.I dont watch alot of football but my husband is from Kansas City and adored said philanthropist who played a huge part putting together NFL.

The point Im trying to make is I thought I had the best care anyone could have and yet I was getting sicker.The more I tried to tell the ID docs to look at infection (I felt sick) I just became an annoyance.Their tests always showed nothing so It was all in my head after that.

Then one day I had Dr.Katherine Poehlmann on my show and a whole world opened up.She led me to many resources that said of course if you feel sick you probably are.She was ill herself.She is no slouch as she was a part of the Rand think tank.And cured her RA with abx not immune suppressing drugs.

Her website is www.RA-Infection-connection.com its about alot more than RA .Many illnesses explored there being of microbial origin.

I went to www.immed.org and my regular GP said what the heck lets try it.You can find treatment considerations on the site.Three days into doxy I sware I wanted to die and I even called Prof.Nicolson and said are you trying to kill me.

He said you are now on the road to regain your health.Keep going and I did.You see the microbes are many and I understand you wonder if its Lyme.

There are many bacteria that can cause all kinds of havoc in the body.But testing is another matter .Its not like House where they scratch their heads and he looks under the microscope and says AH-HA.I tested with Igenex one doc said it was neg one doc said positive.

I also tested positive for C.and m.pneumonia with c.pneumonia out of range .I went ahead with the abx knowing that I might not ever know exactly whats running around in there as Ive been so immune compromised.

Dont ever let a doctor ID or otherwise tell you lyme or any other illness is a fad or unreal.They ARE NOT QUALIFIED to tell you that.

Go ahead and begin your investigation and you will find that there are many doctors who do subscribe to the infectious theory behind disease.
Lyme as well as other microbes.

Roadback.org helps autoimmune patients find them and when you read the history and maybe the book recommended there it will help too.Although I am not on the marshall protocol a very serious protocol not to be taken lightly but there are many infectious conferences and access to published material you can look at on that board but I am not promoting that treatmant.(contriversial)www.marshallprotocol.com

Well Ive rattled on abit but if you get a positive Igenex believe it.And give yourself a shot at health if you have felt unwell.ABX will either help or not.But be informed.I wasnt and I paid a price.I hope Ive helped somewhat.

And if anyone comes along and reads this and is a football fan or from the great state of Mo.Im sorry for your loss of the gentle giant who so loved your state and the game of football....Lamar Hunt one fine fine gentleman,RG
------------------------------
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hshbmom
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The CDC published their case definition of Lyme disease for Public Health Surveillance to provide uniform criteria for reporting cases of Lyme Disease. Part of this definition is listed below.

(Revised 9/96) Clinical description http://www.cdc.gov/mmwr/preview/mmwrhtml/00047449.htm


Get your county declared endemic!

The CDC's definition of an endemic county is a county with 2 confirmed cases of Lyme disease. TWO!

You may know of at least 2 confirmed cases of LD in your county.

We can get our county declared endemic for Lyme disease. This step will help overcome one familiar obstacle to the diagnosis of Lyme disease...the "We don't have Lyme disease here" syndrome.

A history of "exposure" depends on whether your county is considered endemic.

Also, many of us have photos of our EM rashes...and have been diagnosed with LD on the basis of having this EM by a LLMD.

Once a county is recognized as being endemic for Lyme disease it should be easier to get a correct diagnosis.

Your input is welcome. I need someone to take this idea and put legs on it.

Nancy

"Case Definitions for Infectious Conditions Under Public Health Surveillance

State and local public health officials rely on health-care providers, laboratories, and other public health personnel to report the occurrence of notifiable diseases to state and local health departments. Without such data, trends cannot be accurately monitored, unusual occurrences of diseases might not be detected, and the effectiveness of intervention activities cannot be easily evaluated.

In the United States, requirements for reporting diseases are mandated by state laws or regulations, and the list of reportable diseases in each state differs. In October 1990, in collaboration with the Council of State and Territorial Epidemiologists, CDC published Case Definitions for Public Health Surveillance (MMWR 1990;39{No. RR-13}), which, for the first time, provided uniform criteria for reporting cases.

This report provides updated uniform criteria * for state health department personnel to use when reporting the nationally notifiable infectious diseases listed in Part 1 of this report."


The following is a part of the CDC's definition of Lyme Disease:

"Definition of terms used in the clinical description and case definition:

Erythema migrans. For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing. A single primary lesion must reach greater than or equal to 5 cm in size. Secondary lesions also may occur. Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM. For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent. The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.

Exposure. Exposure is defined as having been (less than or equal to 30 days before onset of EM) in wooded, brushy, or grassy areas (i.e., potential tick habitats) in a county in which Lyme disease is endemic. A history of tick bite is not required.

Disease endemic to county. A county in which Lyme disease is endemic is one in which at least two confirmed cases have been previously acquired or in which established populations of a known tick vector are infected with B. burgdorferi."

This web page is huge, use "Control" and "F" to search for Lyme.
******************

Betty broke this statement up to make it easier to read. She also posted the statements at the bottom.

Erythema migrans. For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing.


A single primary lesion must reach greater than or equal to 5 cm in size. Secondary lesions also may occur.


Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM.


For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent.


The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.
*********************************

Now for us to take action!


so we call our COUNTY HEALTH DEPT. to get our county declared endemic

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bettyg
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hi my dear friend tree! hope you get to feeling better soon; we have missed your replies to posts! here's to a healthier new year!


COMPILED BY MELANIE REBER 12-30-06:


Victims of Domestic Violence help:

* Crisis Support Network: http://crisis-support.org/index.html
Family Violence Statistics: http://crisis-support.org/family.htm
24 hour help- 1-800-435-7276

* Office for Victims of Crime (OVC): http://www.ojp.usdoj.gov/ovc/welcovc/welcome.html
Help for Victims: http://www.ojp.usdoj.gov/ovc/help/welcome.html
National Organizations: http://www.ojp.usdoj.gov/ovc/help/dv.htm
Programs and Online Resources: http://www.ojp.usdoj.gov/ovc/help/dv.htm#2
Pennsylvania Victim Assistance: http://www.ojp.usdoj.gov/ovc/help/map/pa.htm

OVC Victim Assistance for Pennsylvania
Phone: 717-787-2040
Web Site: http://www.pccd.state.pa.us

OVC Victim Compensation for Pennsylvania
Phone: 717-787-2040
Web Site: http://www.pccd.state.pa.us

VOCA Funded State Wide Analysis: http://www.ojp.usdoj.gov/ovc/help/map/pava.htm
List of VOCA Victim Assistance grants/programs funded for the State of Pennsylvania listed by city.

* Pennsylvania Coalition Against Domestic Violence: http://www.pcadv.org/hotfiles/Final%20PressRelease11_15.pdf

* Pennsylvania Child Support Program: http://www.tiny.cc/str9u
Child Support Helpline: 1-800-932-0211

Domestic Violence Program Information: http://www.tiny.cc/WDWeO

Helpline Telephone Numbers:

Welfare Helpline: 1-800-692-7462
Medicaid Information Helpline: 1-800-842-2020
CHIP (Children's Health Insurance Program) Helpline: 1-800-986-5437
LIHEAP (Low- Income Energy Assistance Program) Information: 1-866-857-7095
SSP (State Supplementary Payment) Hotline: 1-866-502-9105

Non-custodial Programs and Projects: http://www.tiny.cc/RQETt

* Pennsylvania Domestic Violence Crisis And Support Resources: http://www.aardvarc.org/dv/states/padv.shtml


Keeping you and your family close in my Heart and Prayers...hope some of this information is helpful.

Much love, now as always,
Melanie
--------------------
The National Lyme Disease Memorial Park Project
[email protected]

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MariaA
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This post is crossposted from here:
]http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050753


The following are links to a few threads in which herbal medicine is discussed for Lyme and yeast- mostly those herbs from Stephen Buhner's protocol from his book Healing Lyme.
I've included a few which come from Dr Zhang's protocol, and some candida/yeast probiotics discussions.

Please note: although these herbs can be purchased without a prescription, there can be side effects and you should do this under a doctor's direction. Some posters below indicate they have had serious side effects from some of the herbs. Do not take these herbs without AT LEAST reading Stephen Buhner's book. This thread does NOT give you enough information to self-treat safely!!!

Remember that some of the positive experiences on this forum are the same people posting over and over again. Not everyone has the same experiences with herbal treatment or herbal-and-antibiotic treatment. Some of the posters who report positive experiences are doing many other forms of treatment besides Buhner herbs alone.

The Buhner book contains a 30-page bibliography of studies which support his conclusions, and those references are a good start for more information that may help you evaluate whether to try this treatment.

Our testimonials on the Internet are not a substitute for a decent LLMD's advice and guidance.
********************

Stephen Buhner's book Healing Lyme:
http://tinyurl.com/y4wgbk (amazon.com link, includes good reviews)

Buhner's website with book updates/corrections:
http://www.gaianstudies.org/lyme-updates.htm

Buhner's advice column on Planet Thrive website:
http://planetthrive.com/cgi-bin/members/pub9990215891170.cgi?categoryid=9990235248536


***********************************************

questions about where to buy Buhner Protocol herbs:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050713
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050113

********************
member experiences with Buhner protocol, sources of herbs, and mentions that Raintree cats' Claw uses gelatin capsules and why:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050113

more 'member experiences' threads (some of these are the same people reporting in multiple threads):
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=048986
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050014

Robi initially feeling better on herbs, then relapsing, and others talking about boneset, artimisin, and Buhner herbs:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=046141


**************

bee venom therapy (mentioned in Buhner's book, though not part of the core protocol):
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=045611

***************

discussion of Dr Zhang's recommended herbs and a little discussion of Buhner protocol:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=048986


***************

encapsulating your own herbs:
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050738

***************

thread about a 34-page paper by Dr. Dietrich Klinghardt, MD PhD (Seattle), who incorporates Buhner's protocol (along with detoxification, treatment of coinfections and parasites, various naturapathic methods, salt/C, and many other treatment methods)
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050656

******************

poster reporting heart issues on artemisin:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050316

artimisin/artimisia/artesunate
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050530

*******************

garlic threads (buhner does not recommend garlic for treating Lyme itself mentions this in his online column):

liver safety animal study
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=050113

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=049438

******************

reishi and other mushroom products (mentioned in some of Buhner's other books):
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050274

******************

yeast threads:

oregano oil and a herx or a yeast die-off:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050518


yeast and sexual transmission, and some suggestions for controlling the yeast:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050613


thread discussing an OLD (2000) study on potency of various brands of probiotics:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=049257
more on probiotics:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050683

*************************

milk thistle discussion:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=050531

--------------------
Symptom Free!!! Thank you all!!!!

Find me at Lymefriends, I post under the same name.
diet: http://lymefriends.ning.com/group/healthylowcarbrecipes
Homemade Probiotics thread
Herbal Links Thread

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treepatrol
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Updated 1-12-07

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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bettyg
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if anyone else prints out TREEPATROL'S NEWBIE LINKS after he updated, you might want to hold off today for a bit.


i found 4-5 links he posted in computer questions that i think he meant to add to his ORIGINAL NEWBIE LINKS HERE. so this way when you print this off, you'll get ALL OF HIS LATEST WORK! [Big Grin] [Wink]

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trueblue
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Tree! Good to see you! [hi]

How are things?

--------------------
more light, more love
more truth and more innovation

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treepatrol
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quote:
Originally posted by bettyg:
if anyone else prints out TREEPATROL'S NEWBIE LINKS after he updated, you might want to hold off today for a bit.


i found 4-5 links he posted in computer questions that i think he meant to add to his ORIGINAL NEWBIE LINKS HERE. so this way when you print this off, you'll get ALL OF HIS LATEST WORK! [Big Grin] [Wink]

{BettySaid} i found 4-5 links he posted in computer questions that i think he meant to add to his ORIGINAL NEWBIE LINKS HERE.

I said, They are in NewbieLinks Betty I post them in computer questions more room there then I link to them in Newbie Links.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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treepatrol
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quote:
Originally posted by trueblue:
Tree! Good to see you! [hi]

How are things?

Thanks true things are bad right now in my life. Thanks for asking.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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treepatrol
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UPDATED BABESIOSIS

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treepatrol
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Ehrlichia, family Rickettsiaceae Order of Rickettsiales 07


Georgia USA Ehrlichia Cowdriosis Heartwater


Updated 1,26,07

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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=051350#000015


tree, would you add this later:

it's OFFICIAL ALZHEIMER'S HEADQUARTERS POSITION ON LYME AND ALZHEIMER'S ... NO CONNECTION! thanks my friend. [group hug] [kiss] [group hug]

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page 5

tree, somehow this important link below wasn't shown with this info

"It tells about the brain and all testing for it.
Exceptional is the Brigham/HARVARD site shown that has SLIDES showing MRI, CT, etc"


http://brighamrad.harvard.edu/education/online/BrainSPECT/Lymes/Lymes_Images.html


next time you add/edit, would you add this above the " " paragraph; thanks my friend! [group hug] [kiss] [group hug]

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treepatrol
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updated

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treepatrol
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All on page 3.

Mycoplasmal Infections
Mycoplasma? How to get tested? Treatment?
Mycoplasmal CDC
Mycoplasma
Autoimmune Debate
Mycoplasma Treatments
Autoimmune patients
radiogirl Posted 14-12-2006

Parkinsons
Parkinson or Lyme with links on page
Should read this also it relates to PD
Antibiotic hope for PD
Lyme-Associated Parkinsonism


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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=051656#000016

hi tree,

can you add this advise from NANNIE about fighting denials of health insurance approvals for testing, etc? outstanding advise. thanks my friend! [group hug] [kiss]

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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=3&t=016914#000010

tree, this is OPTIMISTICK'S ADVISE ON COLLEGE ASSISTANCE; outstanding advise!! [Big Grin]

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treepatrol
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{Ann - OH} Insurance commissions for every state


OptiMisTicK Advice College aid

nannies advice Insurance Company made me cry
UPDATED [Big Grin]

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treepatrol
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Updated:Page 2.

New Test for Lyme Disease
CENTRAL FLORIDA RESEARCH


Western Blot Info

Band 41kd Most important?
More on 41K
FDA It is important that clinicians understand the limitations of these tests
ILADS W Blot
Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
Western Blot

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TREE, please add; thanks!

donating $$ to charities, like
LDA & LYME RESEARCH CENTER; legal wordage needed.


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=052294

also, lyme research center $$ can be sent to LDA headquarters EARMARKED FOR LYME CENTER!!

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treepatrol
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Updated this section

Deer Meat CWD Link A & B Below
A Link
B Link Video CWD

Genetics Animations
Biochemistry Animations
Immunology Animations
Physiology Animations
Microbiology Animations
Max Animations


Max Animations

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Tincup
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Tree...

You continue to amaze me.

TC

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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tree, would you add my newbie links/advise LINK to yours since i'll be off internet 7-10?? days for my hip surgery; thanks tree! bettyg
[group hug] [kiss] [group hug]

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treepatrol
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Started new page page 6. also put betty's help links in on 3-26-2007

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treepatrol
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updated this area

Herbs
Peppermint
Original CheapHelp PDF Large6.98MB
Ken Lassesen Cheap Help

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Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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hi my friend, tree! what did you add this time? very handy to show the highlites here! [Big Grin]
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treepatrol
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quote:
Originally posted by bettyg:
hi my friend, tree! what did you add this time? very handy to show the highlites here! [Big Grin]

fixed some links added one or to hunting is fun

>Nose Bleeds <
BLOOD SUPPLY

hunt the other one [Big Grin]

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treepatrol
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updated page four


Antibody Production Sounds like what happens to lymphocyte by Spirochetes
CellsAlive Great Site
How Lymphocytes Produce Antibody
Invasion and Cytopathic Killing of Human Lymphocytes by Spirochetes Causing Lyme Disease 12/16/05
A life cycle for Borrelia spirochetes
Wealth of Info


Bio Film


Bio Film 1
Bio Film 2
Bio Film chitosan 3
Bio Film mg-furanones 4

Support
USA Support

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TerryK
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Hi Tree,
Posting a request for this to be added per a request to me from our Bettyg

Guidelines for Infectious Diseases Specialists Serving as Expert Witnesses
http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=055861

Much appreciate the work you have done on this vast amount of valuable information.

Terry

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treepatrol
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updated

Guidelines for Infectious Diseases Specialists Serving as Expert Witnesses
IDS Guidelines they should read them!
top of newbie links


this is in tick section
Respiration in Ticks

Plastron respiration in ticks


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Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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WOW TREE, you've been editing your whole format here with all your links, etc. FANTASTIC JOB organizing this WEALTH OF GOOD INFO!


well done my friend; what a labor of love you have given to your project sharing it with ALL OF US LYMENETTERS! [group hug] [kiss] [group hug]

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for your site IF you already don't have....

from JAKKI, new member:

Here is the link, it pretty much covers just about every type of vasculitis, however there are no boards associted with it, it's just an information site. Hope it is helpful!

http://vasculitis.med.jhu.edu/

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treepatrol
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added page 3

Herxing *@*^#*Or Ouch

New-->Treating the Herxheimer (JH) Flare Reaction

Jarisch-Herxheimer reaction spirochete:Google Scholar
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction
The Herx Reaction
Herxheimer Reaction Explained
Endotoxins -- Is This What Causes Herxes???(Long)
Posted by : seibertneurolyme
What is happening when you stop herxing on abx

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Do unto others as you would have them do unto you.
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treepatrol
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updated: 8/14/07

New--->Support Group Links
old
Cumulative Lyme Cases 1980 To Current = 273,805
Cumulative Lyme Cases 1980 To Current Link

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Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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treepatrol
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[ 20. August 2007, 08:11 AM: Message edited by: treepatrol ]

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Do unto others as you would have them do unto you.
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treepatrol
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Updated 0n 8/16/2007
Labs
MDL
Igenex Labs
Bowen Lab
Bowen Lab Forms Protocol
BowenNewSite LymeResearch
IGeneX Which Tests to Perform?

New-->Dr Fry Post
New -->Dr Fry Link to Airpark Medical Center

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Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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hi to my good friend tree,

what did you add this time as i went to last post, and it still shows 8-16 date?

thanks! i looked thru first 2 pages but didn't notice anything.

thanks big guy; you tower above all the rest of us! lol [lol]

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treepatrol
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Victims of Domestic Violence
Compiled By Melanie Reber 12-30-06

this one added Wild Condors Newbie Help

Guidelines for Infectious Diseases Specialists Serving as Expert Witnesses

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Do unto others as you would have them do unto you.
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treepatrol
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page 5.robin123 interview

LITERATI WITH LYME VIDEO

WinPlayer

UNDER OUR SKIN

Kris Kraft New Lyme Film Trailer!

San Francisco Lyme Disease TV Talk Show now posted online!

ILADS DVD AVAILABLE FOR PURCHASE

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

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tree,, outstanding job getting these on here and all together! [bonk] [bow]

thank you for all the hours you volunteer keeping your archives alive and adding things as well as finding things in there to present to members!!!

you're our "tree dream" come true! we love you tree! [group hug] [kiss] [group hug]

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Looking
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Hi Tree:

Betty would like you to add this to your list:

Here's a link to the FDA Drug Safety Alert Page:

http://www.fda.gov/cder/drug/DrugSafety/DrugIndex.htm

Good thing to check out for peace of mind if you are taking medications.

Thanks!
Looking

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treepatrol
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up added FDA link towards bottom

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Do unto others as you would have them do unto you.
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treepatrol
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Disabilities Links
Social Security Disability FAQ
IDA = Invisible Disabilities Advocate

Page 4. updated

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Do unto others as you would have them do unto you.
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please add to disabilities area:

CBS' DISABILITY RESOURCES LIST 1-15-08
***************************************

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=062504

i added it to mine also.. BG [Big Grin]

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treepatrol
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Updated page two 2.

Aristo Vojdani

WesternBlot and Elisa tests explaining differences between tests developements and this guy uses both antigens from cultured Bb and Cultured from mammal blood give it a listen Here Pick this one bottom page:NeuroScience Inc. (2..> 28-Jan-2008 12:19 2.5M

Drawbacks of Serodiagnosis of LD
In vivo-induced antigen technology: the most sensitive method of detection for Lyme disease and other tick-borne diseases, Part One of a two-part article

The use of lymphocyte proliferation assay and cytokine production in seronegative patients with Lyme arthritis or neuroborreliosis


Western Blot Info

Betty G I am working on integrating your info but its given me a headache Ill get it eventially.

[ 07. February 2008, 09:28 AM: Message edited by: treepatrol ]

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Do unto others as you would have them do unto you.
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hi tree, just saw your note to me; i understand and of those headaches....uffda! [dizzy]

take care tree! [group hug] [kiss]


here's a new article on neurophysciatric disorder from 12.07

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=063373#000006

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hi tree,

if you don't have ILADS' PSYCHIATRIST BROCHURE, here's info on it and link!


Maybe you could give the ILADS pub "What Psychiatrists should know about Lyme Disease"
to your husband.

In turn, he could take it to your therapist.
Clearly, this family therapist has a lot to learn and this article can help her start!

http://www.ilads.org/PsychiatristBrochure.pdf

Lyme and families are a difficult thing. It strains relationships, tests limits, especially if you are ill too.

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Lymetoo
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Info on spirochetes, which COULD make band 41 show up:

http://www.wholebodymed.com/library_education_details.php?pid=5

Spirochetes

"Spirochetes are the other major type of bacteria that we look for under the microscope. These are corkscrew type, snake-like bacteria. Although there are different types of spirochetes, the one in the mouth is called Treponema Denticola. As an aside, the spirochete called Treponema Pallidum cause syphilis and another type of spirochete called Borellia Burgdorferei causes Lyme disease. All three types of spirochetes are bad guys. But in terms of periodontal microscopic assessment we are concerned when we find the spirochete Treponema Denticola, which has been shown to be associated with periodontal disease."

=============

There is more info at the link above than what is posted here.

Band 41 might show up in the absence of Lyme IF you have a gum disease as stated above.

However, if you're having other Lyme symptoms, it would be reasonable to check that out thorougly.

--------------------
--Lymetutu--
Opinions, not medical advice!

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NMN
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Great lyme essay on effects of lyme on the brain along with other great info:

http://cassia.org/essay.htm

--------------------
Pos BB and Bart(Q & H IGG pos)
Began treat 1 year after start of illness. Diagnosed Feb 2007.

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daise
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Hi Treepatrol,

BettyG thought I should add this. I dearly hope it helps people.

They claim if your insurance company denies coverage for medicine, as long as the other qualifications are met, they will supply meds for $7.00 for each med, per month.

Thread: Prescription Hope--Lot of Lyme Meds!

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065398

daise [Smile]

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Keebler and I have started a red-flagged sticky thread at the top of the Medical Forum:

TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801


We will be adding more.

daise [Smile]

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hi tree,

if you have updated your list, would you show the new date on SUBJECT LINE? thx my friend!! [group hug] [kiss]

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Hi tree,

Topic: AIR TRANSPORT for ACTIVE MILITARY and VETERANS who are ill. (The link:
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=066596)


Medical Air Transport for Wounded Warriors, Veterans and Active Military

http://www.aircompassionforveterans.org


Information provided by:
Colleen Nicholson
Research Assistant to Dr. Burrascano, MD
Founder, Military Lyme Support

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treepatrol
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quote:
Originally posted by NMN:
Great lyme essay on effects of lyme on the brain along with other great info:

http://cassia.org/essay.htm

This link is in newbie links already


ps I have been having trouble updating links I sent a letter to Lou so he could talk to his compter wizz.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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hshbmom
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Please consider adding where to take a biopsy for those with EM rashes....


If you're sending the biopsy to Igenex Labs in California....


Collect several 3-4 mm punch biopsies from
the inner edge of the expanding part of the rash...the inner edge of the outer part of the expanding rash.


Put the biopsies in a dry, unused sterile urine specimen cup. Do not put the biopsies in formalin or alcohol.


Ship the biopsy by overnight express to Igenex Lab in California on a Monday through Wednesday. Do not ship on a Thursday or Friday or your specimen may get ruined over the weekend.


I wasted $300.00 on a PCR biopsy because my helpful, but uninformed physician took the biopsies from the center of the rash where the tick had been attached, not at the active (expanding) part of the rash.


Also, please remind others to take sequential photos of their rash(es) with a ruler in the photo and the date written on their skin...include a photo so you can see the rash and the person's face, if it's possible.


Taking photos got me classified as a "Suspect" case by the state health department. I was told confirmed and suspect cases are the only ones included in the state's Lyme case counts.


I was told I'd be added to the Lyme case count that year, but someone failed to amend the case count and I was excluded from the official statistics.


The health department was too bothered to amend the Lyme case count after they waited 6 moths to contact me and verify my positive Lyme Western Blot test.

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bettyg
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hi tree,

please consider adding this info on DRY MOUTH by i broke up today...


Xerostomia information for dentists ....
*************************************

Helping patients with dry mouth 7.08

By Cathy L. Bartels, Pharm.D., assistant professor, pharmacy practice, School of Pharmacy and Allied Health Sciences, University of Montana


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=069145#000001


very interesting! thx; hopefully tom brown will have things fixed so you can update again! betty [group hug] [kiss]

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treepatrol
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Still having trouble updating newbie links.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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SilkyRose
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Hello.

I'm new, and absorbing everything this wonderful community has gathered.

Great to be here. Thank you.

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treepatrol
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Your welcome silkyrose read newbie links mine and betty g's

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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Carol in PA
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Nutritional Supplements in Disseminated Lyme Disease, Dr. Burrascano, July 2008

http://www.lymepa.org/Nutritional_Supplements.pdf

This is a four page pdf file.
You should print out a copy for future reference.

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bettyg
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hi tree,

fyi, lou b deleted my bettyg's newbie links today since i maxed out the system where i could NOT edit/update anything!

i'd edit all places, and then when downloading; it would not complete loading ... some UBB problem of some sort.

lou tried too without success.

if/when i bring it back ... it will have to be divided up into medical vs. support for ssdi info, etc.


unsure if i want to continue tackling this or not! i'm burnt out; you know how it is.

i know you can't update your huge file either.

just thought i'd let YOU know what happened to it.


seemed so strange to have to remove my link from my signature line referring folks there as well as my welcome letter to newbies who post!

hope you are doing as well as possible; how are you coming on your weight loss? [group hug] [kiss]

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emla999/Lyme
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MOLD TOXICITY, MYCOTOXINS and FUNGALBIONICS


Several years ago three doctors from the World Health Organization (WHO) Collaborating Center For Mycotoxins in Food wrote a book about the negative effects that toxic mold/fungi have on the body. This book was called FungalBionics.

You can see those 3 doctors on the link bellow.

http://www.njmoldinspection.com/fungalbionics.html


The FungalBionics book series:

http://www.fungalbionicbookseries.com/index.htm

http://www.fungalbionicbookseries.com/fungi-my.htm


In this book the authors describe how the exposure to toxic fungi/molds and mold mycotoxins either directly cause or contribute to many of the major health problems and diseases of today.

Dr. Constantini spent much of his life studying the effects that toxic mold/fungi mycotoxins had on human health. And much of his life's work and findings can be found in the FungalBionics book series.

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Tracy9
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Another great resource:

www.lymefriends.com

www.lymelog.com

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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jam338
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KNOW YOUR MOLD & LYME RISKS THREAD:
The symptoms of lyme and mold sickness are basically the same. There could be people on this board, especially those with only clinical diagnosis of lyme disease, who may actually have undiagnosed mold sickness!

Please take the time to read this entire thread and become aware of your possible risks. It is a long thread but information packed with critical information on symptoms, testing your body and testing your home living environment as well as work environment.

When mold is a factor it has to be treated first, before lyme. Mold illness will de-regulate and undermine your immune system. In other words you can spend thousands on lyme treatment and not get as effective results if one of the underlying contributing problems is mold sickness!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/80966

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TF
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Lupus and lyme disease:

I have read numerous lyme articles that state that some people are misdiagnosed with lupus but really have lyme disease. The symptoms cannot be distinguished.

It may not be that simple in all cases, but it can be that many cases of lupus will respond to antibiotics for a variety of reasons, including lyme and other infections as part of the problem.

Take a look at this article. It mentions lupus throughout.

http://www.immed.org/illness/autoimmune_illness_research.html

This explains how the two may be related.

At any rate, if I were to be given the diagnosis of lupus which has no cure, I would want a lyme disease test and would want to try antibiotic protocols to see if I could get rid of my lupus.

Look also at The Road Back Foundation website which talks about successful treatment of lupus with antibiotics:

http://www.roadback.org/

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bettyg
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1 of our members found this wonderful info!! [Smile]


CEREBRAL MALERIA aka encephology

Since babesia is similar to malaria, I thought some here might find this interesting.

http://www.davidson.edu/academic/psychology/ramirezsite/neuroscience/psy324/rebergner/what_is_cerebral_malaria.htm


What is Cerebral Malaria?

Cerebral malaria is a rapidly developing encephalopathy, but much pathology of is not clearly understood. Malaria occurs in millions of people, but only 20-50 % of the cases develop into cerebral malaria. It is unclear why some people develop it and others do not.

Cerebral malaria develops when parasitized red blood cells (PRBCs) adhere to the cerebral microvasculature, causing blockage of the blood's pathway (see photos 6-8). This blockage stops blood flow, leading to a shortage of oxygen and nutrients those areas of the brain. The occlusion of the small vessels occurs diffusely throughout brain. This phenomenon seems to occur in all patients with cerebral malaria, although there are numerous other complications that occur as a result of this disease.

Approximately half of the patients with cerebral malaria have elevated intercranial pressure and seizures. Patients in the Gambia, in West Africa, had rings of PRBCs form around the normal RBCs, which will also lead to microvasculature occlusion.

On rare occations, the parasite causes cerebellar ataxia, but no loss of consciousness. The ataxia can occur up to 4 weeks after a malaria attack occurs, but will disappear after 1-2 weeks.

Physical manifestations of the disease may be an abnormal EEG resulting from the lack of oxygen, loss of sulci, and a MRI may show hemorrhagic lesions and infarction.

A common cause of death for patients with cerebral malaria is acute respitory arrest, which may be a result of the intracranial pressure causing a fatal brain stem herniation.

Most people who survive cerebral malaria have no residual neurologic problems. Only about 10 % of patients surviving cerebral malaria suffer from neurologic deficits such as hemiparesis, hypotonia, or spasticity.

We know we have an unclear understanding of the disease because so many people survive the disease without any neurologic problems. This fact leads us to believe it is unlikely that there is complete obstruction of blood flow.

One hypothesis is that the parasite indirectly causes an abnormally high release of nitric oxide in the brain, which changes brain function in the same way as ethanol. This would result in a unconscious state. However, this state would be reversible without residual neurologic probelms.

This hypothesis explains the reversability of the coma state, however, it does not explain many of the other problems associated with the disease, such as the blocked microvasculature.


look at the 3 photos there folks ... interesting. betty

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Cass A
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Dear Friends,

Here's a link to a very important article about Cipro, Levaquin, Avelox, and Floxin.

There is also a 6-part video.

Apparently, these drugs all contain FLUORIDE, which is a known neurotoxin that can get into the brain, etc.

Hope this helps!!

http://articles.mercola.com/sites/articles/archive/2009/07/18/Antibiotics-to-Avoid-Like-the-Plague-Due-to-FDAs-Oversight-Failure.aspx


Best,

Cass A

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bettyg
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http://www.ncbi.nlm.nih.gov/pubmed/8640597

1: Can J Cardiol. 1996 May;12(5):503-6.Click here to read Links
Comment in:
Can J Cardiol. 1996 Nov;12(11):1146.

Cardiac manifestations of Lyme disease: a review.
**************************************************************

Nagi KS, Joshi R, Thakur RK.
Arrhythmia Service, University Hospital, London, Ontario.

OBJECTIVE:
To describe the clinical features of cardiac manifestations of Lyme disease, the most common vector-borne illness in North America, which occasionally results in cardiac involvement.

DATA SOURCES:
A review of the English-language clinical literature pertaining to Lyme disease and Lyme carditis indexed in MEDLINE from 1975 to 1995.

DATA EXTRACTION:
Studies describing diagnosis, clinical features, treatment or outcome were reviewed.

DATA SYNTHESIS:
Cardiac complications of Lyme disease may occur in up to 8% of patients.

Cardiac manifestations occur in the early phase of the illness, at a median of 21 days from the onset of erythema migrans.

Manifestations of Lyme carditis include

atrioventricular block, myopericarditis, intraventricular conduction disturbances, bundle branch block and congestive heart failure.

Temporary cardiac pacing may be required in up to a third of cases and complete recovery occurs in most (greater than 90%) patients.

The overall prognosis of Lyme carditis is very good, although recovery may be delayed and late complications such as dilated cardiomyopathy may occur.

CONCLUSION:
Lyme disease is a tick-borne spirochetal infection caused by Borrelia burgdorferi.

Cardiac complications of Lyme disease generally occur in the early phase and include conduction system disturbances, myopericarditis and congestive heart failure.

PMID: 8640597 [PubMed - indexed for MEDLINE]
no copyright shown....

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nenet
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Art Doherty's list of Lyme Disease symptoms & misdiagnoses

Main site with links to many resources (some of the links might be dead, but some are still good):

http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html


To get to the list of possible misdiagnoses and symptoms (that could in fact be Lyme), here is the link via the "Way Back Machine," courtesy of www.archive.org -

Lyme Disease Misdiagnosed As ...and Other Diseases/Conditions and Lyme Disease

Here is a list of possible symptoms:

Possible Lyme Symptoms

The only catch is that if you want to follow any of the links that go off of Art's site (like to Medline, etc.), you need to peel the url back to the original link.

So, say you want to learn about the Lyme Disease symptom, Anxiety.

1. You click on the Symptoms List page, then click "Anxiety",

2. then click "MEDLINE - Anxiety Disorders or anxiety AND Lyme disease - 18 on 21 Sep 99"

3. You get an error page. Go to the url box at the top of your browser window, and delete everything that comes BEFORE the http://www.ncbi.nlm.nih.gov part of the address. (You basically want to go to the live version of the site link, if that makes sense.)

4. hit return, and if the link is still valid, it should take you to the correct webpage.


I hope that made sense, and helps anyone that was looking for this old website that was helpful to so many before it stopped being updated.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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bettyg
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dilly's post 9-10-09 about her son/school ...

on IEP !!

how to explain son's cognitive problems :medical vs. behavioral

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/85711?

MUST READ for every parent going thru here; details galore from around 12-15 parents!!

compiled experiences .... bettyg

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WildCondor
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Just curious as to why sticky's have replies in them. Its so confusing!
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bettyg
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condor, tree's post is NOT CLOSED; that's why we can reply and add more info even though he himself can't add it to his "links"; he maxed it out as i did mine.


Medicare and IV ABX Policies
read MY3BOYS comments, 9-28-09

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/86119

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