A couple of weeks ago I got word that Josey was officially exempted from compulsory school attendance, so she felt relieved that the stress of school was removed.  She is on board with being tutored through the local literacy council as soon as she has the brain power and can handle it, to work toward either her GED or the HiSET, which is similar but more accommodating for people with illness or disabilities.  

She's been dealing with the reality that her senior year isn't what she envisioned and she feels cheated by Lyme disease.  Last night, though, she was able to ride in the high school caravan to the homecoming game and attend part of the game.  Her friends put her on a list of students who would be participating so she could be part of the festivities and not have to miss this.  Another friend who is on the student council was made aware of this so he could stand up for her if anyone questioned her being on the list.  THANK YOU to the sweet friends who made this happen! 

Josey also has new glasses ordered since her vision has changed.  I went with her to the appointment to answer questions about fluctuating vision and Lyme and to be a support just in case the eye doctor questioned anything. It turns out several people on staff at the optometrist's office know people who have Lyme disease and the doctor's babysitter has Lyme disease.  We were able to give them more information about Lyme and were glad to get a positive and encouraging response there. 

On September 17, Josey had her second in-person appointment with the LLMD.  Some medication changes were made and IV meds were discussed again.  Jo's nerve pain meds will be increasing, one antibiotic will be changed while another is doubled in strength.  We're also adding artemisinin (an anti-malarial that helps kill co-infections of Lyme diseae), and have a new prescription for Marinol.  Marinol is THC in a pill and will hopefully help with nausea and has off-label uses for some of her other symptoms.  It is typically prescribed for cancer patients going through chemo and for AIDS patients.  We met with the IV charge nurse and with the person who handles the financial end of getting IV treatment.  At her return appointment in December we will likely be putting Josey on IV antibiotics and she will have a port.  Initially we thought she would have a picc line placed in her arm but were told by the doctor that they want to do the chest port.  It would be nice if between now and then the meds make a significant difference and the IV can be avoided.  Josey is all for getting it but there are concerns that she doesn't really grasp - like risk of infection, proximity to her heart/lungs which adds to the risk, increased Herx, and having to have the dressings changed by a home health nurse.  We're also looking at 4-6 months of IV at a cost of around $30,000 that insurance doesn't cover.  The picc line would give me the ability to care for her bandages/dressings but apparently not the chest port.  The nurse did ask if I'm squeamish about bandages. Josey and I grinned, looked at each other and said, "Nope."  Courtney's wreck changed all that for me!  If I can change bandages and care for open wounds, burns, and a bazillion stitches, I've got the picc line stuff covered.  So, we'll see what develops between now and December and hope for either no IV or a picc line.   

1 - I'm not a fan of airing dirty laundry on fb so I'm doing it kind-of sideways via the blog.
2- I may have lost what minimal decorum I ever had.
3- I must look or otherwise present myself as sketchy/untrustworthy/having poor judgement.  Maybe this post is proof. 

ONCE, just ONCE during my girls' lifetime I'd like to be seen as competent and having some idea what is in their best interest.  Judges, lawyers, schools, doctors, ex-family have questioned my ability to care for both of my girls.  In all that time, NOT ONCE have I put them in harm's way.  In fact, I've probably saved their lives more than once at this point.  

Currently pushing me over the edge: A Collierville Schools personnel attempted to tell me I'm making a poor decision by allowing Josey to not attend school this year and to pursue her GED once she is well enough and able to actually remember course material.  I'm "messing up her future."  Lyme Disease is doing that at the moment and I'm trying to keep her alive and hoping to get her well.  I know, don't say anything negative about the wonderful schools.  I'm not intimidated but a parent that hadn't had to fight for their child in the past might be.  Know who you're talking to before you make accusations. We are VERY pro-education in our household. So far, we're up to two masters degrees, three bachelors, two people with professional licenses. Also, I can name numerous successful people who got a GED - my favorite being Dr. Bill Cosby, with an Ed.D. - an earned doctorate in EDUCATION.

Our new physician's office notified me that they won't write the letter stating she's too sick to go to school but they will approve "minimal home instruction with a max of one class only."  That's ridiculous.  So now she will be enrolled in ONE representative class that will cause undue stress, she may not remember at all, and might not even pass. Originally we were told they were on board with whatever we requested regarding school, and the no-school-for-now option was discussed.  

Josey's biological father doesn't even think Lyme disease is real.  He did everything he could to delay resuming antibiotic treatment this summer.  The extra few weeks' delay made her have a worse reaction when she did start again. He won't state that he'll help  pay for treatment or any related expenses, or correspond with me on any level regarding her health, the disease, etc., except to say I have Munchausens by Proxy and want attention.  Maybe this post will prove that to him, too. 

Our visit to Dr. J in DC was encouraging and educational. We will be using the treatment protocol outlined for Josey there and will return for an in-person visit in August, with a phone visit in July.  In the meantime, Jo gets a break from antibiotics for four weeks to allow her body to rest and to add other medications that hopefully will help with her pain, inflammation, and moods.  In July we reassess and decide whether an IV is needed or what oral antibiotics to re-start.  She was comfortable in the clinic and they made sure she understood the information given.  Usually she leaves a doctor appointment completely overwhelmed and anxious.  Mostly, she was overjoyed that she can have a little bit of gluten now and then during the med hiatus.  

We were able to sight-see for a while Sunday afternoon.  This consisted of me taking advantage of handicapped parking and then pushing Josey around the National Mall in the wheelchair, but we both liked that the monuments are wheelchair accessible, thus using minimal time and energy and allowing her to take advantage of a couple hours in the city.  Plus, it was a beautiful day. A few places we just drove by since she was getting tired and achy.  Another time we will go to the zoo and the museums.  Looks like we'll have several visits in the future.     

Our plane rides were a different story.  The first leg, out of Memphis, was delayed due to storms in Atlanta.  This left us sitting on the runway longer than we were in the air and ate up almost all our layover time.  Dashing through the Atlanta airport pushing a teen in a wheelchair, we just made our DC connection.  Josey wheeled herself some, until her shoulders hurt, and I ran behind her.  We must've been funny to watch! Then, the DC flight was taxiing down the runway and we heard the engines die down.  A sensor in the cockpit apparently said a door was open.  So, we sat at the gate again while a crew checked that out.  Poor Josey was absolutely at her wits' end and worn out.  Thankfully the woman sitting next to us was cheerful and funny, and she helped relieve some of Jo's stress.  Arrival time was about 12:30 a.m., just after the last hotel shuttle from the airport!  Everything else went smoothly and after driving around DC some, I can at least feel my way around.  Washington, D.C. must win the prize for most one-way streets, though. 

Currently, Josey is feeling better than she has in six months.  She's taking full advantage of it and will even get to take a trip with the church youth group next week.  Yay!   

Hey guys! Jenna here. I’ve known Jo for about 4 years, and she’s been like a sister to me. I even call her mom “momma”. It’s scary when your best friend has surgeries that normal 50+ year olds have. Telling me all the ridiculous theories (or so called diagnoses) doctors had, including malingering (which means faking it), had me concerned that they would never figure it out. Then she said someone had it- Lyme disease. I thought that meant this was all going to be over with some doxycycline and a nap.  I had no idea how complicated Lyme was, and chronic Lyme baffled me. A few months later I was presented with my greatest academic challenge yet, a argumentative research paper worth 50% of my grade. I was so excited because I was going to dedicate my paper to my best friend. Grammar mistakes caused me to get a 90 (a B where we’re from), but I’m still very proud of my paper because I got to support Jo. Although I plan to be an orthopaedic surgeon (at least as of now), I know that no matter the field I’m in I will listen to my patients, fight for the right diagnosis, and always have Lyme in the back of my mind.

The Phantom Menace

 Chronic Lyme disease is the culprit of a divide in the medical community; yet, according to the Infectious Disease Society of America’s (IDSA) guidelines, it does not exist. IDSA guidelines state that there is insufficient evidence for Lyme disease to be considered a chronic infection after regular antibiotic treatment (“The Clinical Assessment”). Instead, it is a psychosomatic disorder, classified as post-Lyme Syndrome that is caused by “hypochondria and laziness” (“The Clinical Assessment”; Rosner). Yet, “10-20% of treated patients suffer from symptoms…for months and even years following treatment” (“Lyme Disease Study”).  This discrepancy has led to a medical debate that limits physicians’ abilities to treat patients with chronic Lyme, which devastates patient care (Gebhart).  In order to protect those suffering from chronic Lyme disease, the government should ignore IDSA’s guidelines and support Lyme Literate physicians and fund research for the cure.

IDSA guidelines are too controversial to mandate full government support of treatment regiments. The Attorney General found evidence that the guidelines were manipulated and “excluded opposing views from its panel” (Klotter). According to the current Lyme Guidelines, a patient will be improperly treated if they have chronic Lyme, which is worse than not receiving treatment (Hoppel). Guidelines are also influenced by politics. Johanna Ferguson, who won the Dean’s Award for Health Law at the University of Boston, says, “Often, practice guidelines reflect the industry's interwoven relationships rather than the best available medical knowledge”. The statistics about Lyme are skewed because Lyme disease is not only underreported, but misdiagnosed (Gebhart). The symptoms of Lyme disease are not specific (Hoppel), which makes the disease difficult to diagnose. The only tell-tale sign of Lyme disease, a bulls-eye-shaped rash, is seen in about 30% of cases (“Lyme Disease Test”). The tests are extremely inaccurate, with “50%-70% rate of false negative results” (Gebhart), and “sick patients cannot get diagnosed and not be treated because of antiquated, unsubstantiated tests” (qtd in Rep. Smith). If these statistics are the basis for widely accepted guidelines, shouldn’t they be accurate?

Because Lyme disease is a bacterial infection, physicians expect patients to be healthy after a round of antibiotics. Those who refute the existence of chronic Lyme disease argue that the disease does not remain in the body post-treatment; rather, patients with persistent symptoms are not getting enough antibiotic to kill all of the bacteria (Barbour). This claim was discredited when doctors saw their patients getting better after extended antibiotics (Ferguson). “At least 19 independent societies representing the USA and numerous European countries have produced remarkably similar clinical practice guidelines for Lyme disease, discouraging the diagnosis of chronic Lyme disease,” says Paul Lantos, M.D. from Duke University Medical Center, but these 19 other societies have no listed scientific credentials in the article- a technique used by Lantos to bolster his argument without any proof. IDSA and others are concerned about long time use of antibiotics (Hoppel), which causes a problem when bacteria become resistant to drugs.  Being overcautious has left patients to “dangle in the gap between two sides of an academic debate” (Rosner). Treatments or doctor’s visits that deviate from IDSA guidelines are not covered by insurers, and doctors who want to treat the diseases can lose their licenses (Klotter; Ferguson), which depletes available patient care.

IDSA guidelines are used as a basis for the Center for Disease Control’s (CDC) guidelines, which are what doctors use for their diagnoses, and what insurers use to determine coverage (Klotter; Rosner; “Rep Smith”). Because of this, patients are “terribly underserved” (Gebhart), and their care suffers. Most of the money for research is from the National Institute of Health (NIH), which gives funds based on public health needs (“NIH research planning”). If one study found that most patients still had remnants of the bacteria’s DNA in their blood (Rosner), while another found that most of the patients diagnosed with chronic Lyme disease more likely have fibromyalgia or chronic fatigue syndrome (Lantos), then more research is needed before chronic Lyme patients and their doctors are discredited. And since the 30,000-40,000 patients with Lyme may only represent 10% of all cases, this is an issue of public health (“Lyme Disease Study”).

Since IDSA guidelines govern multiple aspects of patient care, the best way to help those suffering with chronic Lyme is awareness. A survey of New England residents found that “public opinion can alter how the disease is treated” (Closter). Senator Blumenthal from Connecticut is currently trying to pass a bill to receive research funds for Lyme disease (“Senator Blumenthal”). Congressman Smith from New Jersey pushed for patients of chronic Lyme to receive treatment despite the guidelines (Rep. Smith). Patients with Lyme disease cannot sit and wait for the government to sort out the problem. Since May is Lyme disease awareness month, the Mayday Project encourages patients to peacefully protest in front of IDSA’s headquarters. The best way to change the opinion of the government and physicians is to continue research for the cure and inform people of the dangers of Lyme disease (“Lyme Disease Study”).  Physicians also must be educated about Lyme disease. Since Lyme Literate physicians are “few and far between” (Gebhart), educating our doctors can reverse the way patients are treated. Making people aware of chronic Lyme disease may be the push that leads to support, and physician support will only increase the credibility of the argument.

Discovered in 1977 (Hoppel), Lyme disease is still a major threat to people. As one of “the fastest growing vector borne diseases in the country” (qtd in “Lyme Disease Study”), Lyme disease is a serious infectious disease. The debate as to the existence of chronic Lyme may never be resolved, but this cannot affect patient care. As long as there is no decision, patients suffering with chronic Lyme should have access to fair medical treatment, which includes insurance coverage and funding to research the cure. Just as it is the role of scientists to debate, it is the role of the government to defend the people, and in the case of chronic Lyme disease, bypassing IDSA’s guidelines does just that. Public demand for support can achieve this, but people and physicians must become aware of what is going on. If, “treating Lyme is a marathon” (Gebhart), then it is up to the public to demand support for those who are running in it.

Works Cited

Barbour, Alan. "Remains of Infection." Journal of Clinical Investigation. 2012. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.

Closter, Linda, et al. "Long-term Lyme Disease Antibiotic Therapy Beliefs among New England Residents." Vector-Borne and Zoonotic Diseases. 2011. Academic OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.

Ferguson, Johanna. "Cure Unwanted? Exploring the Chronic Lyme Disease Controversy and Why Conflicts of Interest in Practice Guidelines May Be Guiding Us Down the Wrong Path." American Journal of Law & Medicine. Spring 2012. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>

Gebhart, Fred. "Compounding for Lyme Disease." Drug Topics. Dec. 2011. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.

Hoppel, Ann M. "The Lyme Wars: Debate Rages about Treatment." Clinician Reviews. Apr. 2008. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.

Klotter, Jule. “Lyme Guidelines Still Unchanged.” Townsend Letter. Jul. 2010. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.

Lantos, Paul M. "Chronic Lyme Disease: The Controversies and the Science." Expert Review of Anti-infective Therapy. 2011. Academic OneFile. Web. 2 Apr. 2014. <http://go.galegroup.com>.

"Lyme Disease Study Author Dr. Keith Berndtson Finds Need for New Guidelines for Treating Persistent Lyme Infection." PRWeb Newswire. 22 May 2013. Academic OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.

"Lyme Disease Test is Badly Flawed." Guelph Mercury. 15 Aug. 2011. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.

"NIH Research Planning - About NIH - National Institutes of Health (NIH)." U.S National Library of Medicine. U.S. National Library of Medicine, n.d. Web. 10 Apr. 2014. <http://www.nih.gov/about/researchplanning.htm>.

"Rep. Smith Holds Lyme Disease Hearing." Targeted News Service [TNS]. 18 Jul. 2012. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.

Rosner, Brian. "Chronic Lyme Disease: Real Disease or Medical Myth?" Townsend Letter. July 2009. General OneFile. Web. 30 Mar. 2014. <http://go.galegroup.com>.

"Senator Blumenthal Continues Push for Lyme Disease Awareness and Prevention." New Haven Register. 22 Mar. 2014. General OneFile. Web. 31 Mar. 2014. <http://go.galegroup.com>.

 "The Clinical Assessment, Treatment, and Prevention." IDSA Guidelines. Infectious Disease Society of America, n.d. Web. 28 Mar. 2014. <http://www.idsociety.org>.

Josey was diagnosed with Lyme disease in December 2013, CDC criteria met in January 2014 via testing by iGenix, and has multiple food allergies, and  intestinal yeast overgrowth, with more testing to come.   

Not all my posts will be so long, but this is an overview to let others know what Josey is going through and has in the past. Too many others are suffering without support and information.  We're documenting and if
even one person will find something familiar, some hope, some support, something, it's worth it.  So, read on....
 
    Josey is my daughter and she's 16 years old.  She's beautiful, witty, smart, a hard worker, athletic, and a good friend.  Or she used to be all those things.  Athletic is off the list for now, as is hard worker.  Surviving is her main
focus now.  Instead of focusing on school, church, friends, boys, part-time jobs, softball, and general teenage life, she is in bed or in a wheelchair trying to survive the pain and misery of Lyme disease. She has been sick for about four years - since at least 7th grade -  but got a diagnosis of chronic Lyme at the end of 2013 after being told by doctor after doctor that she wasn't sick.  Her pain was dismissed, she was accused of