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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:
posted
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 ------------------------------ Posts: 118 | From: Texas | Registered: May 2006 | IP: Logged
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
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.
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
Posts: 1490 | From AL | Registered: Jun 2006
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bettyg
Unregistered
posted
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!
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)
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
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
posted
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!
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Tree! Good to see you!
How are things?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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!
{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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by trueblue: Tree! Good to see you!
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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
UPDATED BABESIOSIS
-------------------- 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.
-------------------- 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.
next time you add/edit, would you add this above the " " paragraph; thanks my friend!
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
updated
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- 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.
can you add this advise from NANNIE about fighting denials of health insurance approvals for testing, etc? outstanding advise. thanks my friend!
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tree, this is OPTIMISTICK'S ADVISE ON COLLEGE ASSISTANCE; outstanding advise!!
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
{Ann – OH} Insurance commissions for every state
OptiMisTicK Advice College aid
nannies advice Insurance Company made me cry UPDATED
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- 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.
also, lyme research center $$ can be sent to LDA headquarters EARMARKED FOR LYME CENTER!!
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- 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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tree...
You continue to amaze me.
TC
-------------------- If takes all the future, we'll live through the past, If the phone doesn't ring, it's me.
All that is necessary for evil to succeed is that good men do nothing. Posts: 11204 | From The Moon | Registered: Jun 2004
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bettyg
Unregistered
posted
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
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Started new page page 6. also put betty's help links in on 3-26-2007
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
updated this area
Herbs Peppermint Original CheapHelp PDF Large6.98MB Ken Lassesen Cheap Help
-------------------- 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.
posted
hi my friend, tree! what did you add this time? very handy to show the highlites here!
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by bettyg: hi my friend, tree! what did you add this time? very handy to show the highlites here!
fixed some links added one or to hunting is fun
>Nose Bleeds < BLOOD SUPPLY
hunt the other one
-------------------- 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.
-------------------- 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.
Much appreciate the work you have done on this vast amount of valuable information.
Terry
-------------------- I feel more like I do now than I did when I got here. Posts: 4577 | From Oregon | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- 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.
posted
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!
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bettyg
Unregistered
posted
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!
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- 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.
-------------------- 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.
-------------------- 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.
-------------------- 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.
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
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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
-------------------- 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.
-------------------- 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.
Good thing to check out for peace of mind if you are taking medications.
Thanks! Looking
Posts: 448 | From Canada | Registered: Oct 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
up added FDA link towards bottom
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Disabilities Links Social Security Disability FAQ IDA = Invisible Disabilities Advocate
Page 4. updated
-------------------- 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.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
-------------------- 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.
"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.
-------------------- Do not take this as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops! Lymetutu Have you read Three Cups of Tea? Posts: 45144 | From Texas TuTu | Registered: Feb 2001
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-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Currently on: IV Ricephin 4 G 4 dayswk.Orals:Mino,Rifampin, nystatin,Actigall,Artemisia Posts: 500 | From Ireland | Registered: Jan 2007
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daise
Unregistered
posted
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.
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.
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
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.
Posts: 1490 | From AL | Registered: Jun 2006
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bettyg
Unregistered
posted
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
very interesting! thx; hopefully tom brown will have things fixed so you can update again! betty
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
I'm new, and absorbing everything this wonderful community has gathered.
Great to be here. Thank you.
Posts: 1 | From Florida | Registered: Jul 2008
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
posted
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.
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.
Posts: 773 | From U.S.A | Registered: Jul 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
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!
TF
Frequent Contributor (1K+ posts)
Member # 14183
posted
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.
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:
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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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.
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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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 -
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.
posted
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
UBBFriend: Email this page to someone!
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