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San Diego Photos & Links: ID Week Lyme Disease Rally and Vigil October 2015

IMG_2427ed InvisiblyLymeMontanaLast month, Lyme disease patients and patient supporters gathered outside the annual ID Week conference sponsored by the Infectious Disease Society of America (IDSA) to protest the IDSA’s Lyme disease treatment guidelines and their role in obstructing patient access to proper testing, treatment, and insurance coverage.

The conference is attended annually by physicians, researchers, and representatives from agencies and medical and research institutions from across the nation and around the world.  Not all of these attendees deal directly with Lyme disease in their practice or research, and therefore not all are aware of the adverse impacts of the IDSA Lyme disease treatment guidelines.

This year’s conference took place in Sand Diego, California, and the Lyme rallies and vigil outside were co-sponsored by The Mayday Project, Lymedisease.org, and the San Diego Lyme Support Group.  Patients also attended from other parts of the country, as with past years’ rallies and vigils. Continue Reading »

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Lyme Denialism and IDSA/CDC Misinformation Campaign ~ Recent Article Links

I’ve linked to articles in the past that I felt were particularly valuable for understanding or conveying why there is controversy surrounding Lyme disease diagnosis and treatment (not a small or simple topic).  I’ll re-link to some of those here as well, but first, here are some very recent must reads to that end.  They will help you better understand the parts and pieces, help others understand where you are coming from better, or at the very least impress you as impressive syntheses of parts and pieces you already know.  Whichever category is the case for you, these are links you need to have saved.

Recent Links

Lyme Disease Guidelines Panelists Engage in Coordinated Propaganda Campaign

Continue Reading »

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Invisible Illness, Depression, and Speaking Out ~ Guest Post by Erika Morgan

It’s time to ‘stamp out stigma’ placed upon people with mental illnesses…Speak out for those who feel they cannot speak out for themselves.

The following article, as with the two guest posts before it, began as a heart-felt facebook post that resonated with friends and patients quickly.  As with those previous two, it warranted additional circulation and preservation (with some overlapping themes, purposes, and encouragements as well).  It is posted here with the express permission of the author and only minor alterations into an article-friendly format.

By Erika Morgan (Published with permission)

My Summer came with so many more “downs” than “ups”. It became so overwhelming I pulled back from talking hardly to anyone. But I needed to “recharge my batteries” so to speak. Thankfully, I finally feel like I’m coming up for a breath of fresh air. Thank you for all who are praying for me because I know that is the reason I made it through the Summer and into Fall. My body seems to really dread this time of year. Not because of the trivial “ugh the weather is getting horribly cold and I don’t like it”, but because it makes my body hurt more and my emotions plummet. I deal with Seasonal Affective Disorder along with all the other health and mental health issues I deal with. If you haven’t heard of S.A.D., I encourage you to do some research because it’s more common than you think.

Since I am bringing this up, People don’t “choose” to feel depressed. Depression is different than the sadness every human experiences. Depression is a lot of times due to a chemical imbalance in the brain. Other reasons include past or current trauma, illness(es), an unhealthy living or work environment, etc.

People who are diagnosed with depression or any type of other mental illness often get looked down upon like they are “less than”. It’s time to “stamp out stigma” placed upon people with mental illnesses that include, but are not limited to: Major Depressive Disorder, Bipolar, Schizophrenia, Generalized Anxiety Disorder, Obsessive Compulsive Disorder, Post Traumatic Stress Disorder, Eating Disorders and Suicidality. People with mental illnesses do not need people to treat them as a label. They, no, WE need support. So please take this moment to pray for those who deal with these illnesses that don’t discriminate.

I did not intend to write such a long post especially about mental illnesses and the need for people to support those people who have to deal with these illnesses every second of every day. It just came as I typed. All I planned to do was give a quick update, but when I feel God telling me to post more about something, I do not and will not hesitate. I refuse to.

Because people NEED to know the truth whether it is hard to hear or not. I need the support of people around me and the only way I can get that is by letting people know what is truly going on. All the chronic physical illnesses I deal with, especially the inflammation in all areas of my brain caused by Chronic Inflammatory Response Syndrome, Chronic Neuro Lyme (for which a cure has yet to be found), and PTSD obviously has had an affect on me emotionally.

I pray you won’t see me as my illnesses, but as who God truly made me to be- MYSELF. Please get to know me for my character and not for my illnesses. I really need people to do this so that I won’t be overtaken by my struggles.

I need to have something in my life other than my own issues. But I need the help of other people if I’m going to get out of this deep pit I’m in. So PLEASE, help me. Or let me know of someone with an illness or illnesses that you ARE helping so that I can be happy for them and add them to my prayers.

That’s all I ask. That you don’t forget about those of us with chronic illnesses and especially those with invisible illnesses. Because we already feel alone enough as it is. Thank you to those who have read this whole status update. I used the very little energy I have because I can’t stay silent about that which needs to be discussed in today’s society. Especially regarding things as sensitive as mental illness. I ask that you will do the same.

Speak out for those who feel they cannot speak out for themselves.

Originally posted on Facebook on October 3, 2015

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ILADS peer reviewed Lyme Guidelines appropriately added to National Guideline Clearinghouse: preliminary context notes and relevant links

10347165_10152410801854817_2069342014657568288_nAs most Lyme patients are aware, patients, physicians and medical practitioners seeking Lyme disease treatment information will only see one set of Lyme treatment guidelines referred to by the CDC.  The problematic guidelines they will find, authored by the Infectious Disease Society of America (IDSA), create obstacles to diagnosis and care that leave thousands of Lyme disease patients undiagnosed and untreated.

Most physicians are only aware of this one set of problematic guidelines, and treating outside of their parameters can mean sanctions and fines for them and refusal by insurance companies to cover care and medicine for their patients (additional links provided below for further reading).

Additionally, many of the outdated and poorly supported assumptions about Lyme disease (distribution, viable vectors of spread, persistence in the body, to name a few) and about its diagnosis and care that were used in creating IDSA’s guidelines are likely to skew their thinking about this illness and perpetuate misinformation that is highly counter to effective prevention, diagnosis, and treatment.

This is very costly for patients in need of timely diagnosis and care, and precludes treatment for most patients that are not diagnosed early.

The IDSA guidelines, however, are not the only peer-reviewed guidelines developed per applicable standards.  The International Lyme and Associated Disease Society (ILADS) developed evidence based, peer reviewed guidelines that are the first to be developed per Institute of Medicine (IOM) standards.  Most patients and Lyme Literate practitioners find that the ILADS guidelines represent more effective treatment and diagnostic methods (based on current and past science excluded from IDSA guidelines) and provide better information about key aspects of the disease, in addition to better information about options, needed by patients and providers to properly asses options for care.

The rationale for sharing and mentioning only one set of standards on major medical and agency websites could be attributed to many factors (see background links below), but most importantly, poses many risks to patients.

Today’s news of the inclusion of ILADS guidelines on the National Guideline Clearinghouse website,  is giving patients hope that additional tools will be come more safely available to doctors.  Tools they need for their recovery, but tools that would also save countless thousands of future patients from so many of the obstacles they have faced to date.

Personally, this news comes on the same day as my approval for Social Security Disability for Lyme disease.  Had these guidelines been available to mainstream local doctors to safely use when I was bit in 2010, it is extremely reasonable to say that I may have recovered from Lyme disease and the coinfections I contracted locally.  The geographic bias perpetuated by IDSA guidelines is a primary factor in my misdiagnosis (for the first 3 years of my illness) which led to these illnesses becoming chronic and disabling (this issue has been covered elsewhere on this blog and in articles on NorthernRockiesLyme.org).

As fellow ‘Lyme Warrior’ Rebecca Suchenski so perfectly responded regarding clearinghouse inclusion, “Take a bite out of that IDSA!!!!!”

*There is much to say about this development, so more will be added in the coming hours and days to this post and via additional posts if/as necessary. Published Sept. 21, first update Sept. 22.

PRIMARY LINKS

Clearinghouse link (Sept. 21, 2015):

Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease.

Cameron DJ, Johnson LB, Maloney EL. Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease. Expert Rev Anti Infect Ther. 2014 Sep;12(9):1103-35. [213 references] PubMed External Web Site Policy

Today’s post from ILADS (Sept. 21, 2015):

ILADS TREATMENT GUIDELINES ARE NOW LISTED ON THE NATIONAL GUIDELINES CLEARINGHOUSE WEBSITE

ILADS is the first organization to issue guidelines on Lyme disease that were developed in accordance with the IOM standards. The document provides a detailed review of the pertinent medical literature and contains the first set recommendations for Lyme disease based on the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) process. This rigorous review format is also used by many other well-respected medical organizations including the World Health Organization (WHO), the American College of Physicians, and the National Institute for Health and Clinical Excellence (NICE) in the UK. ILADS guidelines are the only Lyme disease guidelines that included a patient from the Lyme community as an author or as a member of the guidelines development panel.

Today’s Post from Lymedisease.org (Sept. 21, 2015)

LYMEPOLICYWONK: ILADS Lyme guidelines on National Clearinghouse!

These new guidelines are the first Lyme disease guidelines to use GRADE, an exacting method for evaluating the quality of research studies, and to include a Lyme patient on the development panel.

“These guidelines put patients front and center,” according to Lorraine Johnson, JD, MBA, Chief Executive Officer of LymeDisease.org, who is a co-author of the ILADS guidelines.

“There are two standards of care in Lyme disease—those of ILADS and those of the Infectious Diseases Society of America,” Johnson says. “Physicians should discuss both standards of care with patients.  Patients should make informed choices in consultation with their doctors about their best treatment options, based on their personal values and circumstances.”

CONTEXT NOTES

Relevant questions so far ~

What does this mean for patients?

What does this mean for physicians?

How likely or quickly will anything change?

Q&A (From facebook discussions so far)

Questions from various discussions, followed by my own speculative, opinion-based answers

Q: Are IDSA docs going to accept these guidelines? Who will see them and where? (Frances H., with permission)

A: They are actual guidelines in their own right (and already were) now posted on the clearinghouse site (because they are peer reviewed guidelines developed using all applicable standards/processes). So doctors using them (ilads) are using current guidelines, and they can easily demonstrate it. Ilads followed recommendations and standards (for creating guidelines) that IDSA did not. And used better science. It will still take time (asit has been) to get them out there, but cdc and other agencies are now even farther out of line for only mentioning one set of guidelines. IDSA may not change a thing, but they should be worried for a number of reasons.

Q: I am not exactly sure what this means for us. Anyone know? (Stephanie Fischer, with permission)

A: It means that threats to doctors for not using current guidelines are easier to refute, because these are also inarguably also current guidelines. They already were….they were created through applicaple process and peer reviewed. But this further substantiates that. It may not mean an immediate change, but it gives further defense to doctors treating counter to idsa’s guidelines if they are treating within this set.  It means better standing when insurance companies refuse to pay based on a doctor not following ‘current guidelines’.

Q: Is the ISDA somehow bypassed? Or, would they be forced to adopt these guidelines? (Stephanie Fischer, with permission)

A: They are two sets of guidelines, but both now approved in the clearinghouse (the national site for guidelines that have met certain standards). So, IDSA guidelines and ILADS guidelines are both ‘current guidelines’. But ILADS followed more rigorous procedures and of course included better science. So for IDSA, it means they still have their guidelines, but doctors should be better able to compare the two and safely use either. IDSA’s do not stand up well side by side, and the information referenced in ILADS guidelines goes a long way to refute most of IDSA’s common phrases to the press, such as “there’s no evidence of chronic lyme” or “there’s no evidence that long term treatment is effective”

BACKGROUND LINKS

Related Background

Grossman Column: Time to legislate against Lyme disease

Relevant Past Message from ILADS President:

From May 2015 to IDSA regarding guidelines review

ILADS Message to IDSA Lyme Guidelines Panel: Do the Right Thing.

2015 IDSA Guidelines Review Comment Period

From this blog

2015 Comment Period Links

From elsewhere

(Additional links available in blog posts noted above)

Review of Lyme Disease treament leaves out patienst ~ Poughkeepsie Journal

Lyme Patient Advocates Meet with IDSA President, Discuss Concerns About Guidelines Review Process (press release)

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“Today I just grieve…” ~ Guest Post by Rory Hubert Kahn

Originally posted on facebook, shared here with the author’s kind permission

11224742_132234987125288_4063884958125883156_nSome days are so hard. Please continue your prayers for my friend, Bambi, who is fighting ‘like a girl’ to recover from her second Lyme stroke. She’s got a long way to go and more hard battles to fight. Her beautiful face will return to my cover tomorrow, but for today I want to honor the life of another Lyme friend who has lost the fight.

You know, we all look pretty good. We don’t have deformities or scars to be outward proof of how sick we are. We wear this armor of courage, and we smile through horrific pain and reply ‘I’m fine’ because if we don’t do that we lose everyone.

The truth, as with any chronic illness, is that we are tired, we are in terrible pain ALL THE TIME, and we are SCARED! Our friends in this fight, the people who truly understand what life with Lyme is like, are dying around us. I’m not afraid of death, but I’m not ready to go there yet.

No one has a choice in when it is their time to die, but we don’t even have acknowledgement that we are sick. Our government is so deep in criminal denial, they know the truth, the evidence is everywhere and is so powerful, but the government somehow sidesteps around their liability.

11193344_1563942170526129_6530102884183031654_nThere is so much blood on the hands of people in power, yet nothing is done because admitting it would put people in high places into jail. I know no one wants to hear this. People do not like conspiracy theories or speaking poorly of our country.

It is very clear to all lymies that our family and friends who are not afflicted with this plague are tired of hearing it from us so they ignore us or push us away. I try not to put so much doom and gloom on my page because it’s not good for me (or anyone else), but today I will wear my heart on my sleeve because I’ve lost another friend and I’m so scared.

Rest in Peace, Kelly. Today I will allow myself to mourn. Tomorrow I will pick up my sword and begin the fight again, because you should be here, Kelly. Your life really mattered. I know God sees our plight, and some day we will understand the master plan of all of this.

Today I just grieve….

11181405_845458622193399_9219985418067586621_nRory is a Lyme patient and advocate, and a beautiful human being.  This post quickly touched a lot of hearts on a day that a lot of hearts were hurting.  Somewhere on a similar thread, someone’s comment stuck with me that, “suicide is a lyme issue” and that is something we come to know through the losses, and there have been many this year.  You can see past photos of Rory in posts here and possibly on NorthernRockiesLyme.org (and their respective facebook pages) at the Philadelphia MayDay rallies at the October 2014 IDWeek conference, and from the Arlington MayDay protest from May 2015.

The following graphics were shared on each Lymies’ respective pages with the request to share and use as cover photos.

11846637_899953756743885_784369078323865597_n  12006195_870773666347190_7696011783029595307_n

If you have trouble downloading them here or finding them on facebook, they are (or will be) also saved as cover photos on the Invisibly Lyme Montana facebook page (as well as any others people create that I see).

A memorial page for Kelly has been created on the blog “What is Lyme?” that will be added to with additional details.

Thank you, Rory, for allowing me to post this.  And thanks to Kory James for allowing me to use your graphic in this post.

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‪#‎NationalSuicidePreventionDay‬ ~ Guest Post from Jordan Landerman

‪#‎NationalSuicidePreventionDay‬ ~ Cross posted from Facebook with the Author’s kind permission, artwork also by the author, Jordan Landerman

11011104_1028927410465291_9036673691724799444_n

Yesterday I posted a status, and had some interesting responses.

I essentially “came out” as suicidal. This isn’t the first time I’ve made this known to people, but it’s the first time I’ve blatantly posted it on social media.

Loved ones who have known this about me for many months, who I’ve sat in front of and literally flat out told, and who didn’t take me seriously at all before, and actually mocked me, are now taking me seriously because they think making it public is a plea for attention. When it’s private, it’s easy to ignore, but now that it’s public, God forbid something happens to me, and they look like an a$$hole.

Let me talk about suicide for a moment.

Suicidal thoughts / actions can be considered both a symptom, and a disease. They can occur alone, or alongside other issues such as bipolar disorder, chronic pain, self-harm, and terminal illness. They can be seemingly “rational” (I am in so much pain everyday that it would make more sense to kill myself than live with this much suffering) or “irrational.” (I have a great life, good health, and a happy family, and for some reason I want to die.) But disease has nothing to do with rationality. There is nothing inherently irrational about diabetes, about hemophilia, about a broken wrist, or about suicide.

Suicide rests at #10 on the list of top 10 causes of death in the United States.

#1: Heart Disease: Imagine telling someone you’ve been diagnosed with heart disease, and they say “You don’t need to take drugs for that. It’s all a state of mind.”

#2: Cancer: Imagine being afraid to tell your friends and family that you have cancer, because they might think you’re looking for attention.

#3: Chronic respiratory diseases: You’re suffering every day from emphysema, but you must hide your symptoms from the world as you struggle to breathe because if everyone knew you were having trouble breathing they would think you were insane!

#4: Accidents: “If she had had a stronger relationship with God that drunk driver might not have hit her…”

#5: Stroke: “You’re dating him? And you know he’s at a higher risk for stroke? Uh, yikes. You need to improve your taste in men.”

#6: Alzheimer’s: Imagine someone suffering from Alzheimer’s being told that they just need to try harder to remember things.

#7: Diabetes: “You’re so selfish! You’re telling me you have diabetes?? You have a 2 year-old child!”

#8: Influenza and pneumonia: Imagine telling people you have the flu and everyone instantly assuming you’re lying.

#9: Kidney disease: “Yeah, nephrosis, sure… look, nobody’s kidneys are perfect. We all have problems.”

#10: Suicide.

You can judge me. Go right ahead. But the truth is, I’ve been dealing with severe depression since I became chronically ill. I’ve lost friends to suicide. I have lived it every day for years. And I’m proud of myself. I’m still here. And I’m gonna still be here for the next hour. And that’s all I know right now. And that’s fine. Because once I get through this hour, I will focus on the next hour. And then the next.

Faking it until you make it. Smiling while your life falls apart. Taking walks when you want to take your life, eating food when you want to vomit, brushing your hair in the morning when you think you are the ugliest person on the planet. There’s nothing wrong with this, and often, it’s the only way you can survive.

The biggest thing that people often don’t realize is that you can be suicidal and want to live. They are not mutually exclusive. I want to live. And I fight really, really, really hard to be here.

Shatter the stigma. Stop the judgement. End the accusations. Let’s talk about suicide. Let’s support survivors. There is no shame here. I have no shame, do you?

Jordan Landerman is a college student and Lyme disease patient from California who contracted Lyme while hiking a trail on her college campus.  She is also an activist, and her videos, posts, and art have been shared in some combination preveiously on this blog (InvisiblyLymeMontana.com), it’s associated facebook page, NorthernRockiesLyme.org, and/or it’s associated facebook page (Northern Rockies Lyme Disease Coalition).  Her Lyme Disease Challenge Video was extremely touching, and she has recently reached thousands with a very genuine video depicting some of Lyme’s scarier types of moments.

Her post also included the following shared public #NationalSuicidePreventionDay‬ post, which has been shared almost 4,000 times so far, and liked by almost 14,000 viewers (credited via link):

Today is National Suicide Prevention Day. In light of that I’m gonna tell a secret. I think social media is often a lousy mortician, desperately trying to make us all look more alive, and my online persona has historically had trouble telling the truth. Meaning, I don’t post on my bad days. On my bad days I cry and quit and give-up and throw tantrums and then a few days later, when I’m feeling a bit better, I post a photo of myself doing a handstand on the beach. I only understand some of why it feels healing for me to speak directly to depression and anxiety and suicidality within the context of my poetry, when it is still a challenge for me to speak to it outside of the container of art. Thank god for art for that reason. But also, I’d like to be more invested in telling the truth, even when it stirs up my vulnerability and my terror and my shame. We are a culture that shames people who tell us they are hurting, so people don’t tell us they are hurting, and we lose them to that silence. I have lost too many people to that silence. So here is a photo of my couch. It looks nothing like the beach. I’ll never do a handstand on it. Somedays I just lay here and cry.

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Mary Beth Pfeiffer Article in Poughkeepsie Journal: Review of Lyme disease treatment leaves out patients

If you only share one article this month (or even this year) about Lyme disease, consider this one.

I’ve describe multiple articles lately as ‘must read’ and I’ve got a great many more to catch up on.  This one, however, is a must, must, must share and a must link-to in addition to being a must read.  You’ll see why.

Among the many reasons, I think that as patients we are so mired in the politics and so aware of the background that it becomes impossible for us not to delve (more quickly than we realize) into the politics when explaining our disease to family and friends.  At time, I think we leave them still uneducated about the basics of the disease and still baffled about why we are ranting about the politics.  This is the type of article that can put into context for them (as we may forget to do) why the politics take center stage in our thinking about Lyme and why the politics have such a tremendous impact on our care.  As well as shedding light on the controversies and the depth of the problem, as well as the nature of who we are dealing with.

Review of Lyme disease treatment leaves out patients

She comes from a state with fewer than 10 Lyme disease cases a year. She has not been involved in Lyme disease causes, but rather in funding cancer research.

Yet she has been named “consumer representative” on a panel that will rewrite treatment guidelines for a tick-borne illness with 20,000 reported cases in the mid-Hudson Valley from 2007 to 2013 — and 300,000 nationwide annually. This while federal standards say the panel should include not one but two people to represent the public: “a current or former patient and a patient advocate.”

As it stands now, it has neither.