Its possible I may never be able to get treatment...

First to explain, I'm 18 yrs old still living with my parents and am unemployed. I've been having symptoms for a year, that I suspect to be lymes. I have muscle twitches, joint cracking, brain fog, head pressure, short term memory confusion/loss, tiredness, fatigue, occasional chestpain/palpitations. I was seeing a LLMD doctor in Towson, MD, who seemed like she knew what she was doing, but the treatment we tried either gave me a serious reaction or had no effect. The problem is that because she does not cover insurance, my mom was refusing to pay for it, and these trips were getting expensive. I've heard that there is no LLMD that accepts insurance, if that is the case, I'm afraid I may have to live with this forever. I don't know what to do, I've tried to explain to my mom what I'm feeling, but she doesn't believe that I have lymes. It would be great if I could somehow get a positive result-then everyone would understand what I was going through. But I dont know how or where I can get a test more accurate than the WesternBlot/ELISA, and im sure if there is something out there that is going to be costly too.

Post Edited (Katie18) : 2/22/2012 9:00:44 PM (GMT-7)

3 articles, the one i cannot find was on yahoo today and then the truth police (pharma dvertisers) took it down..it talked about girls from another town. found it..its at bottom

erin Brockovich-3 articles
http://abcnews.go.com/Health/erin-brockovich-research-upstate-york-tourettes-case-preliminary/story?id=15763605
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http://www.ageofautism.com/2012/02/tics-and-toxins-evidence-points-to-environment-infection-in-leroy-outbreak.html

That month, a product called Turf Herbicide was “used to spray broadleaf weeds on varsity football and soccer field.” In summer 2009, Roundup Weed killer was used in mulch beds, but not in 2010. (The law banning pesticides was passed in April 2010 and may have affected spraying that summer.)

This probably explains the orange substance that cropped up on playing fields at the school last year – so thick that it coated students’ shoes and clothes, so widespread some thought it was pesticide sprayed from an airplane. Officials said it was a harmless grass fungus called rust. Ironically, these fungal outbeaks may point to a counterintuitive new development: the complete and sudden absence of pesticides on school grounds.

Based on that and a history of flooding and water problems at the school, which is partly sited on a FEMA flood hazard area and wetlands, we speculated that harmful metabolites of a fungus – otherwise known as a mycotoxin -- might also have gained a foothold. One possibility: ergot alkaloids, toxic products of fungi that can grow on rye and other grasses. We told the story of a man in the village of Bath, about 70 miles from LeRoy, who developed similar symptoms last September. He lives next to a field that was planted last summer in ryegrass and not harvested, adjacent to a swamp and a levee. He draws his water from a well in the back yard.

Since then, local news outlets have spoken to experts debunking the possibility of mycotoxins, but no specific tests have been done. (For Leroy a Fungal Theory and Expert Doesn't Buy Ergot Theory.)

In December, the school district tested several places inside the school for mold spores and found none, although they did not do “destructive” tests – cutting open walls and the like – to look for hidden sources. Many experts say that it is the only way to completely rule out mold. They also did one test of the air outside the building – location not given – as a “control” to see if inside readings were higher.

One negative test was for a fungus called a. fumigatus, which can produce ergot alkaloids. A June 2005 study in the journal Applied and Environmental Microbiology found, according to its title, “Abundant Respirable Ergot Alkaloids From the Common Airborne Fungus Aspergillus Fumigatus.”

“Ergot alkaloids are mycotoxins that interact with several monoamine receptors, negatively affecting cardiovascular, nervous, reproductive, and immune systems of exposed humans and animals,” the report said. The alkaloids develop in especially high quantities on maize (corn) and latex paint, according to the study. In a comparison chart, ergot alkaloid production was far higher in latex paint than in any other medium.

That is intriguing because one substance the LeRoy school sprays annually on its grounds is white latex paint, to create the lines that mark playing fields. In the buildings and grounds report, the district said it has used Super Stripe Athletic Paint and Field Marking Paint, two latex brands, every year including 2011.

That might offer an alternative explanation for the Cheerleader Syndrome others have noted. Simply put, cheerleaders spend their time on the sidelines. (And they wear fewer clothes than running backs.) At LeRoy, four of the first 12 girls affected were cheerleaders and two were soccer players, according to the state health department report. In the 2002 North Carolina cluster cited in the Times article, five of the 10 students were current or former cheerleaders.

In Corinth, N.Y., north of Albany, two girls who came down with similar tic disorders last year were described as avid members of the softball team, and at least one of them was also a lacrosse player. The first girl was affected last May when she collapsed and suffered a seizure on the pitcher’s mound during the first inning.

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http://news.yahoo.com/erin-brockovich-research-upstate-york-tourettes-case-only-090515870--abc-news.html

The possibility of an environmental trigger has been bolstered by reports of similar symptoms in two teens living in Corinth, a town 250 miles from LeRoy. The girls started showing symptoms in May, around the same time they passed through LeRoy on their way to a softball tournament in Ohio. At least one has since been diagnosed with Tourette syndrome

Hi Katie,

I am sorry you have such an uphill struggle in addition to your illness.

You've had some good suggestions already; educating your mother and continuing to look for a doctor to help. I would also suggest detoxing to help ease some of your symptoms. Please have a look at our "New to Lyme?" thread for info on that.

How is your diet? Are you exercising? It doesn't have to be heroic -- a good walk can really help.

You could look into doing an at-home herbal protocol, but you would have to do a great deal of research to carry this out.

Educating yourself is a good idea anyway, of course! We can help you there.

Wishing you the best!

Hang in there Katie.  I know it may not help you but it seems all of us with lyme have been down that road.  It can be so frustrating.  First and foremost, you have to faith in yourself that you will get well.  My LLMD told me it takes patience, positive thinking and prayers and although not a religious person, I did find it helped to follow this protocol. It took me a long time but I did get well.  With lyme, half the battle is mental.  Lyme really affects your reasoning and does in fact cause anxiety and depression which makes approaching the disease logically very difficult. 

Don't give in - keep searching until you find the right dr.  I went to 10 drs including an infectious dr. and LLMD and it was only on insistance of my sister that I found the LLMD I have now that I love. 

Maybe this will help.
There is a program that will reimburse Lyme patients for their testing if they can show that they have a "true financial need". Here is how they (the Ferndale Foundation) worded it;

"The Lyme Test Access Program (Lyme-TAP) is a nationwide patient assistance program offered by Ferndale Foundation in coordination with Lyme Patients Assistance Group to provide reimbursement assistance of initial Lyme-related lab tests to patients who demonstrate true financial need."

Here's the site link:
www.lymetap.com/lyme-disease-lab_tests

Dr. Klinghardt suggests that patients use abx treatment for a total of 6 weeks before having any blood tests for Lyme or any of the co-infections, in order to improve the chances of being seropositive (having a positive result show).