LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » My Mystery Illness

 - UBBFriend: Email this page to someone!    
Author Topic: My Mystery Illness
NATE
Junior Member
Member # 10694

Icon 1 posted      Profile for NATE     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have been sick for about three years now...I got so sick to the point I almost died. I found white willow bark...and that took away my migrain, and head stinging....I tested for everything, nothing came back on my tests. Never got bit by a tick, I lived in L.A. when I first got sick. I know what I have is contagiouse. It is spread through kissing...everyone I have kissed has the same symptoms as me. I tested for all the common diseases...syph, lyme,...all that stuff. I know it is bacterial, I took medications, and was getting better...but no Dr. I went to could tell me what it is. I have all the symptoms of lyme, or anything for that matter...but no direction to go. I fear for a friend of mine who I kissed who has lost everything and now she is so ill...all the same symptoms I had... I told her to take white willow bark...but her Dr.'s said no, it might interfere with her meds...I am lost, I wish someone would do a study on me.
Posts: 3 | From Sacramento | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
lymesucks
Member
Member # 10575

Icon 1 posted      Profile for lymesucks     Send New Private Message       Edit/Delete Post   Reply With Quote 
Im sorry you are feeling ill. You are not alone...im trying to fight a battle and I dont even know if its the right diagnosis.

Please tell me 2 things:
What test did you have done for Lyme????? (Elisa, Western Blot, etc...)
And please tell me your symptoms....
I am no doc, I barely figuring out whats wrong with me....and i'm not even certain.
But.....i have researched sooo much over this last year. I may be able to suggest some things.

[Smile]

Posts: 56 | From bayarea | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
Jill E.
Frequent Contributor (1K+ posts)
Member # 9121

Icon 1 posted      Profile for Jill E.     Send New Private Message       Edit/Delete Post   Reply With Quote 
Nate,

There is Lyme Disease in Los Angeles, despite what the Southern California doctors and some departments of health say.

I was bitten in San Diego,in a residential neighborhood, standing on cement and feeding a cat (which had ticks), and four years later my dad was. We both got Lyme, and I also got other tick-borne diseases. Yet most local doctors refuse to believe it, test for it or treat it.

If you go to the CaliforniaLyme yahoo group or the California Lyme Disease Association, you will find out that almost every county in California has confirmed Lyme ticks.

Please go to the Newbies link and learn about the testing for Lyme Disease. The ELISA blood test, which is the one most doctors will do if they do a Lyme test at all, has many inaccuracies.

You need to work with a doctor who understands the Western Blot test (more accurate but still can be negative under certain conditions), which laboratories are certified tick-borne disease labs, etc.

Did you ever post on any of the celiac disease email lists? You might have been someone I corresponded with.

Good luck,
Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

Posts: 1773 | From San Diego | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
Lymeblue
LymeNet Contributor
Member # 6897

Icon 1 posted      Profile for Lymeblue     Send New Private Message       Edit/Delete Post   Reply With Quote 
This text will answer some of your questions....and why, if you do have lyme, were misdiagnosed many times.....

A lot of lyme sufferers diagnosed themselves in the first place not a doctor,..later on educate themselves and get an LLMD......It seems you already "covered" the initial stage of your disease.....

Glad you were not diagnosed by a "phony" autoimmune disorder or syndrome....:


Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease..

Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.

Fewer than 50% of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or ``bull's-eye'' rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.

The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track a narrow band of cases for epidemiologic purposes. As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor were they meant to define the entire scope of Lyme disease.

The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.

Of patients with acute culture-proven Lyme disease, 20-30% remain seronegative on serial Western Blot sampling. Antibody titers also appear to decline over time; thus while the Western Blot may remain positive for months, it may not always be sensitive enough to detect chronic infection with the Lyme spirochete. For ``epidemiological purposes'' the CDC eliminated from the Western Blot analysis the reading of bands 31 and 34. These bands are so specific to Borrelia burgdorferi that they were chosen for vaccine development. Since a vaccine for Lyme disease is currently unavailable, however, a positive 31 or 34 band is highly indicative of Borrelia burgdorferi exposure. Yet these bands are not reported in commercial Lyme tests. When used as part of a diagnostic evaluation for Lyme disease, the Western Blot should be performed by a laboratory that reads and reports all of the bands related to Borrelia burgdorferi. Laboratories that use FDA approved kits (for instance, the Mardx Marblot) are restricted from reporting all of the bands, as they must abide by the rules of the manufacturer. These rules are set up in accordance with the CDCs surveillance criteria and increase the risk of false-negative results. The commercial kits may be useful for surveillance purposes, but they offer too little information to be useful in patient management.

There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

Testing for Babesia, Anaplasma, Ehrlichia and Bartonella (other tick-transmitted organisms) should be performed. The presence of co-infection with these organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.

A preponderance of evidence indicates that active ongoing spirochetal infection with or without other tick-borne coinfections is the cause of the persistent symptoms in chronic Lyme disease.

There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. Short treatment courses have resulted in upwards of a 40% relapse rate, especially if treatment is delayed.

Most cases of chronic Lyme disease require an extended course of antibiotic therapy to achieve symptomatic relief. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.

Many patients with chronic Lyme disease require treatment for 1-4 years, or until the patient is symptom-free. Relapses occur and maintenance antibiotics may be required. There are no tests currently available to prove that the organism is eradicated or that the patient with chronic Lyme disease is cured.

Like syphilis in the 19th century, Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, somatization disorder and any difficult-to-diagnose multi-system illness.

Posts: 983 | From The sky | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
You can be bitten by a tick and not know it. Less than 50% of people with known tick bites get a Lyme rash.

What are your primary symptoms? What meds did you take that helped?

I am somewhat doubtful that you passed on Lyme disease to everyone you have kissed. It is not that contagious in my opinion. There may be other tickborne diseases which are more easily transmitted -- not sure which ones though.

Give us more info and we will try to help.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
charlie
Frequent Contributor (1K+ posts)
Member # 25

Icon 5 posted      Profile for charlie     Send New Private Message       Edit/Delete Post   Reply With Quote 
This makes no sense at all...willow bark is what aspirin is derived from.

Kissing doesn't spread anything but supposedly mono or the common cold.


????????

Posts: 2804 | From Texas | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
mjbucuk
LymeNet Contributor
Member # 843

Icon 1 posted      Profile for mjbucuk     Send New Private Message       Edit/Delete Post   Reply With Quote 
what abt mycoplasma..... can that be spread thru intimate contact like kissing? I cannot remember. My son had Lyme Babesia & Mycoplasma for which he has been on meds
Posts: 758 | From now TX | Registered: Mar 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by MRB:
"everyone I have kissed has the same symptoms as me..."..

ummmm..yah, right

Time to move on and entertain yourself elsewhere.

uh huh

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

Posts: 95723 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
charlie
Frequent Contributor (1K+ posts)
Member # 25

Icon 6 posted      Profile for charlie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oddly, everyone I have mooned has the same symptoms as me...
Posts: 2804 | From Texas | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by charlie:
Oddly, everyone I have mooned has the same symptoms as me...

Is THAT right? Man, I would have never guessed!! [lol]

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

Posts: 95723 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
NATE
Junior Member
Member # 10694

Icon 1 posted      Profile for NATE     Send New Private Message       Edit/Delete Post   Reply With Quote 
You know...I know, my symptoms. Very cruel people, and very stupid to think you know it all. If the Dr.'s don't, you sure and the hell do not. I know, at least three of the people I have kissed are ill, and seeking medical attention. And no answer in site. Head stinging pain, and head ache. Ear ringing, joint pain, vision problems, fever, rash, fatigue, loss of appetite, heart problems, breathing problems, and bowel problems. All going on at the same time...BTW, Syphilis is spread through kissing, so it is not to say there are not lesser bacteria on the same line....that can be spread, and cause illness.
Posts: 3 | From Sacramento | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
northstar
Frequent Contributor (1K+ posts)
Member # 7911

Icon 1 posted      Profile for northstar     Send New Private Message       Edit/Delete Post   Reply With Quote 
Originally posted by charlie:
Oddly, everyone I have mooned has the same symptoms as me...
------------------------------------------------------------------------
OOOOh, that was YOU?


Northstar

Posts: 1331 | From hither and yonder | Registered: Sep 2005  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.