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Category Archives: Lyme Blogs

News: Via The Mayday Project – Lyme Patients Rights Trampled On Again

Via The Mayday Project

This was to be forwarded to all Lyme Warriors and Supporters and the Lyme Community

Over the years that I have been in advocacy there has been one person who often stirred the pot and railed many different Lyme organizations. Lucy Barnes (AKA Tincup) has made many of our lives difficult at times. However, today I would like to thank her for an email I received from a mutual friend. She is on point with her assessment of the Working Group for the Federal Bill. This information should not have been hidden from the community! This information should have been made available to all who wish to apply as soon as these advocacy groups and patient organizations were made aware of the application! However, certain groups in our community believe they have the right to make up your minds for you. The Mayday Project thinks differently! Here is Lucy’s letter to the community:

Lyme Patients Rights Trampled On Again,
This Time By Lyme Disease Organizations

On July 17, 2017 the announcement below was published by the Department of Health and Human Services.
Lyme disease organizations knew of the announcement that stated the HHS was ready to accept nominations for the open “patients and families” seats at the table of the newly formed federal Working Group.

Unlike many projects and fund raisers these Lyme organizations announce with great enthusiasm, they are not broadcasting this important information so patients and their families will know about it or be able to participate in the process.

When asked directly who was being nominated by what Lyme groups, no one would volunteer the information so patients could support the nominees, submit other names to be considered or object to the names submitted.

The ability to have a choice in the matter was taken from Lyme patients and their families across the country by:
• the Lyme Disease Association (LDA),
• the International Lyme and Associated Diseases Society (ILADS), and
LymeDisease.org (formerly CALDA).
• Other Lyme groups are involved and have also refused to get the word out to the patients and the public.

We expect these kinds of sneaky, underhanded tactics coming from the Infectious Disease Society of America (IDSA), the Centers for Disease Control and the American Lyme Disease Foundation (ALDF).

We don’t expect leaders of groups we’ve supported, that were supposedly set up to represent the patients, to purposely deny patients and their families a voice and a choice.

Shame on them!

If you want to nominate someone for the open seats, the deadline for doing so is before the close of business on August 16, 2017.
Announcement of Intent To Establish the Tick-Borne Disease Working Group and Solicitation of Nominations for Appointment to the Working Group Membership

A Notice by the Health and Human Services Department on 07/17/2017
Link Here
Printed version:
PDF
Publication Date:
07/17/2017
Agency:
Department of Health and Human Services
Dates:
Nominations must be received no later than close of business August 16, 2017.
Document Type:
Notice
Document Citation:
82 FR 32711
Page:
32711-32712 (2 pages)
Document Number:
2017-14965

AGENCY:
Office of the Assistant Secretary for Health, Office of the Secretary, U.S. Department of Health and Human Services.

ACTION:
Notice.

SUMMARY:
The U.S. Department of Health and Human Services (HHS) announces establishment of the Working Group.
The Secretary of Health and Human Services is responsible for ensuring the conduct of and support for epidemiological, basic, translational, and clinical research related to vector-borne diseases, including tick-borne diseases.
The Working Group will assist in this effort.

The Working Group will consist of representatives of appropriate federal agencies and non-federal entities who represent diverse scientific disciplines and views.

The Working Group will provide expertise and review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.
This notice also will serve to announce that HHS is seeking nominations of individuals who are interested in being considered for appointment to the Working Group.

Resumes or curricula vitae from qualified individuals who wish to be considered for appointment as a member of the Working Group are currently being accepted.

DATES:
Nominations must be received no later than close of business August 16, 2017.

ADDRESSES:
All nominations should be sent to:
CAPT Richard Henry,
Office of HIV/AIDS and Infectious Disease Policy,
Office of the Assistant Secretary for Health,
U.S. Department of Health and Human Services,
330 C Street SW.,
Room L001 Switzer Building,
Washington, DC 20201

FOR FURTHER INFORMATION CONTACT:
CAPT Richard Henry,
Office of HIV/AIDS and Infectious Disease Policy;
Telephone: (202) 795-7615;
Fax: (202) 691-2101;
Email address: richard.henry@hhs.gov

When the charter for the Working Group has been filed with the appropriate Congressional committees and the Library of Congress, this document will be made available online.

Web site information about activities of the Working Group will be provided when the URL has been identified.
The charter will include detailed information about the purpose, function, and structure of the Working Group.

SUPPLEMENTARY INFORMATION:
Section 2062 of the 21st Century Cures Act authorizes establishment of the Tick-Borne Disease Working Group (Working Group).
The Working Group will be governed by provisions of the Federal Advisory Committee Act, Public Law 92-463, as amended (5 U.S.C. App.), which sets forth standards for the formation and use of federal advisory committees.

The 21st Century Cures Act is intended to advance the research and development of new therapies and diagnostics and make substantial federal investments in a wide range of health priorities.

Under Section 2062 of the 21st Century Cures Act, it is mandated that the Secretary of Health and Human Services establish the Working Group.

The Working Group will be comprised of representatives of appropriate federal agencies and non-federal entities.
The Working Group membership will represent diverse scientific disciplines and views.
The charter for the Working Group has been drafted.

When the charter is approved, it will be filed with the appropriate Congressional committees and the Library of Congress; hard copies of this document will be made available upon request.

The approved charter also will be accessible on line.

The Working Group will be established as a non-discretionary federal advisory committee.

Objectives and Scope of Activities.

The Secretary of Health and Human Services is responsible for ensuring the conduct of and support for epidemiological, basic, translational, and clinical research related to vector-borne diseases, including tick-borne diseases.
The Working Group will provide assistance for this effort.
The Working Group membership will provide expertise and will review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to help ensure interagency coordination and minimize overlap, and to examine research priorities.
Membership and Designation.

The Working Group will consist of 14 voting members who represent diverse scientific disciplines and views.
The composition will include seven federal members and seven non-federal public members.
The federal members will consist of one or more representatives of each of the following:
• Office of the Assistant Secretary for Health,
• the Food and Drug Administration,
• the Centers for Disease Control and Prevention, and
• the National Institutes of Health.
The non-federal public members will consist of representatives of the following categories:
• Physicians and other medical providers with experience in diagnosing and treating tick-borne diseases;
• scientists or researchers with expertise;
• patients and their family members;
• non-profit organizations that advocate for patients with respect to tick-borne disease.

Individuals who are appointed to represent federal entities will be classified as regular government employees.
The non-federal public members will be classified as special government employees.

Invitations of membership will be extended to:
• other agencies and
• offices of the Department of Health and Human Services and
• other individuals as determined by the Secretary to be appropriate and beneficial for accomplishing the mission of the Working Group.
The federal members will be appointed to serve for the duration of time that the Working Group is authorized to operate. Participation of the appointed federal members will be at the discretion of their respective agency head.

The non-federal public members will be invited to serve overlapping terms of up to four years.
Any non-federal public member who is appointed to fill the vacancy of an unexpired term will be appointed to serve for the remainder of that term.

A non-federal public member may serve after the expiration of their term until their successor has taken office, but no longer than 180 days.
Terms of more than two years are contingent upon renewal of the charter of the Working Group.

Pursuant to advance written agreement, non-federal public members of the Working Group will receive no stipend for the advisory service that they render as members of the Working Group.

However, non-federal public members will receive per diem and reimbursement for travel expenses incurred in relation to performing duties for the Working Group, as authorized by law under 5 U.S.C. 5703 for persons who are employed intermittently to perform services for the federal Start Printed Page 32712 government and in accordance with federal travel regulations.

Estimated Number and Frequency of Meetings.
The Working Group will meet not less than twice a year.
The meetings will be open to the public,
• except as determined otherwise by the Secretary,
• or another official to whom authority has been delegated, in accordance with the guidelines under Government in the Sunshine Act, 5 U.S.C. 552b(c).

Nominations:
Nominations, including self-nominations, of individuals who have the specified expertise and knowledge will be considered for appointment as public voting members of the Working Group.
A nomination should include, at a minimum, the following for each nominee:
• A letter of nomination that clearly states
• the name and affiliation of the nominee,
• the basis for the nomination, and
• a statement from the nominee that indicates that the individual is willing to serve as a member of the Working Group, if selected;
• the nominator’s name,
• address, and
• daytime telephone number, and
• the address, telephone number, and email address of the individual being nominated; and
• a current copy of the nominee’s curriculum vitae or resume, which should be limited to no more than 10 pages.
Every effort will be made to ensure that the Working Group is a diverse group of individuals with representation from various:
• geographic locations,
• racial and ethnic minorities,
• all genders, and
• persons living with disabilities.
Individuals being considered for appointment as public voting members will be required to complete and submit a report of their financial holdings.

An ethics review must be conducted to ensure that individuals appointed as public voting members of the Working Group are not involved in any activity that may pose a potential conflict of interest for the official duties that are to be performed.
This is a federal ethics requirement that must be satisfied upon entering the position and annually throughout the established term of appointment on the Working Group.

Dated: July 12, 2017.
Donald Wright,
Acting Assistant Secretary for Health
[FR Doc. 2017-14965 Filed 7-14-17; 8:45 am]
BILLING CODE 4150-28-P

*NOTE-
• I have not wanted, and still do not want anything to do with this 21st Century Cures Act or its federal Tick Borne Disease Working Group.
• This one action has removed more “rights” than it ever thought of giving to patients nationwide.
• However, since it has been established, I feel patients should have a say in who will be representing them, their families and all of the patients who are currently sick and/or soon will be.
• LB / LUCY BARNES AKA TINCUP
• 8.1.2017

Looking Back at 2013: Lyme Disease and Suicide, An Ignored Problem

SingleRose

Looking Back at 2013 – Memorable Blogs

Lyme Disease and Suicide, An Ignored Problem

Being active in the Lyme community, I am starting to wonder when Lyme Disease will get the media attention it is going to require to expose this terrible epidemic. I don’t get it, it has all the edge you would think a news story would need. It has denial, corruption, conspiracy, and death. And sadly, many of the deaths are suicides. I have read time and time again that suicide is the #1 cause of death for those that suffer from Lyme Disease. Yet, I can’t find any statistics. Why are there no statistics on this? Why is noone studying this?

People who are not aware of Lyme Disease, particularly, “chronic Lyme Disease,” might wonder why so many would commit suicide. I mean isn’t it a simple, easy to diagnose and easy to treat disease? Well that is very far from the truth, even though your typical mainstream doc might suggest this. You see, Lyme tests are very inaccurate. When you go to your doctor with symptoms, which might possibly even include a bull’s eye rash, drs rarely recognize Lyme Disease. They are just not educated on it. Symptoms of Lyme include headache, fever, achy joints, neurological symptoms and many more. All of these can be confused for other conditions. When not treated right away Lyme disseminates throughout your body becoming second stage Lyme and eventually third stage.

Here are some of the reasons I believe people with Lyme Disease commit suicide.

1. HOPELESSNESS BY LACK OF EDUCATED DOCTORS

During the search for answers on what is making you sick, tests are not showing any real answers. You’re symptoms keep getting worse, and you’re wallet is getting emptier. You are trying to hold down your job and maintain your family or lifestyle. In the meanwhile you are getting sicker and sicker. Drs are not believing you and filling your charts with labels like hypochondria, fibromyalgia, chronic fatigue disorder, and many other conditions without looking into the true cause of what is causing your symptoms.

Many doctors also don’t know that there are several tick borne infections, not just Lyme Disease.

As the patient gets sicker, but the inaccurate testing is not showing up any cause for the symptoms, the drs and patients alike start to get frustrated. Patients spend all their money on treatments and different drs without getting any real concrete answers. This leaves the patient just drained and feeling hopeless. You grow up thinking when you are sick you can turn to doctors. With Lyme, this is not the case. Sometimes they become your worse enemy.

 

From a poll I did in my Lyme Support Group

Quotes from a Lyme Poll from a Lyme Support Group (Names have been removed)

 When asked if a patient’s doctors knew to test them for other co infections of Lyme Disease patient’s responded:

 * “All of mine refused. In fact my old MD who just dismissed me, and told me I would be dead by now if I had babesia.”

 * “One dr said to me, what the hell is that? when I asked him if I should be tested for Bartonella or Babesia.”

 * “My primary care doctor originally diagnosed me positively with 3 bands of lyme disease. He didn’t bother to test for coinfections, and didn’t even want to prescribe me doxycycline. So much for their hippacratic oath!!”

* “My doctor had no idea!! He thought I was crazy! He said get out of the house, get a part time job. Oh really, I hardly had the energy just to get to his office! Ugh doctors need to be educated!!! When I was given my first blood test to check for lyme it came back cdc positive. I took that plus all my scary labs to my ex doctor. Maybe if someone comes in with my symptoms he’ll think to test for lyme.”

 

When asked how many years it took for patients to get diagnosed with Lyme Disease patient’s answered:

* “14 and 3 quarters, my brother 11, my sister 8, my mom 33.”

 * “25 years”

 * “Over 30″

 * “I was misdiagnosed with MS in 1995, but have been sick off and on before that. Was properly diagnosed in 2007.”

* “24 years – out of the country in the U.S. (I am Canadian).”

 *” 5″

* ” One internal medicine doc. One rheumatologist. One neurologist. And too many ER doctors to count! At that point, I gave up on doctors altogether and turned to the internet. I felt I was dying. I knew it was up to me to save my own life. Finally, through much internet research, I discovered Lyme. I thought my symptoms fit to a T. After that, I found a LLMD and had my diagnosis confirmed. I have had Lyme and co-infections for over 25 years and wasn’t diagnosed until 2008, 23 years after becoming infected.”

 

When asked how many doctors did you see before getting diagnosed patients answered:

 * “10″

 * ” Too many to count! 7 negative tests before positive through igenex.”

 * ” Hard to answer this one since I was diagnosed till I as 30… Who knows how many docs I saw as a kid…”

 * ” 5 doctors, 17 appts”

 * “15+”

 * “After 22 yrs. Undiagnosed and I wasn’t keeping track, so I can’t really say but a guess would be 15.”

 * “Probably in the 15-20 range.

 

2. ISOLATION

Being that doctors have a hard time accepting Chronic Lyme Disease as a real disease, this trickles down to the families and friends of Lyme patients. Patients are constantly questioned by their own loved ones as to why they are not better with treatments, why their symptoms come and go, why no tests show Lyme Disease. Lyme patients start to lose everyone around them and feel isolated.

There is also the aspect from the families and friends view: “I don’t know what to do, or how to help?” Friends and families stop calling because they simply don’t know what to do. They don’t know how to help someone who’s doctor doesn’t know what to do. It’s hard for people to feel helpless. It’s easier to avoid the situation then to sit there not knowing what to say to the sick person.

 Quotes from a “Isolation Poll” from a Lyme Support Group

(Names have been removed)

 * “Even on good days it’s difficult to be out with friends because my former support system of friends no longer exists.”

 * “Completely….my whole personality has changed due to the isolation and feelings of abandonment from my former “friends”.One of the most difficult aspects of lyme in my opinion.”

* “I have a friend with lyme. she gets around good and still has her job. she said she hasn’t been by to visit me and that she was sorry. she continued;, everytime I look at u, I get afraid that one day I will be as bad as u, so its better for me to just stay away. do I feel isolated. every minute of everyday..”

 * “Extremely isolated, but much less now with all my fb. Lyme groups! It was desperate isolation before I was dx. Being told this was fibromyalgia and seeing others being able to do so much more than I could with”fibromyalgia”.”

* “This is the most isolated I have ever felt in my life. I have been through an abusive marriage, divorce and tons of other things but Lyme leaves you completely alone. Everyone expects you to wake up one day and just be over it.. To go out in the sun and feel better. And they tell you to be careful not to make “Lyme” your life, when it is your life.. You feel it when you sit down, when you stand up, when you eat, when you sleep and when you DON’T sleep.. Isolated, yes.. and guilty, because they get angry for not “doing enough to just pick your self up”….”

 * “i had felt very isolated but then i reached out to many of Facebook’s lyme support groups and found my second family.”

 * ” I do, I still get the, “well you look fine” treatment from people I never woulda thought would treat me that way.”

 * “My daughter feels totally isolated. She no longer has a peer group at school since she has been at home more than at school. She gets stir crazy at home, but has so little energy for doing things outside of home.”

 

3. DEBILITATING SYMPTOMS

Each person is different in how Lyme presents itself in symptoms. There are a multitude of symptoms since Lyme can affect any organ, multiples organs, and changes throughout the course of the illness. Lyme can cause headaches, fevers, joint pain, nerve pain, anxiety, depression, shakiness, unstability, dizziness, vision distrubances, auditory disturbances, hallucinations, seizures, paralysis and death.

The ever changing symptoms keep us at home. Many Lyme patients find themselves becoming “agoraphobic” that is, afraid to leave home. Even if you have a moment or two where you feel ok, you don’t know what symptoms will strike next and when. You can be feeling halfway ok and think you will be able to run and grab a gallon of milk, then as soon as you get to the store youre legs get weak, your heart starts to pound, you break out into a sweat and feel faint. So leave the cart in the isle, you run back to your car (or crawl if you have to) and drive home. It’s embarrassing. This routine of evolving symptoms that comes out of the blue keeps us isolated. It’s much easier to experience symptoms at home and be able to just lay down if you need to, then to be out at a family reunion and have an “embarrassing attack” in front of everyone.

I am barely even touching on the severity of Lyme symptoms. Several Lyme patients deal with severe daily pain, paralysis, not being able to eat, seizures and just plain strange symptoms such as internal tremors, unexplained jerking, memory loss or what some patients describe as “brain fog.” One patient explains her worst daily symptom like this, “I wake up feeling like every inch of energy has been drained from me, I feel like my mind is alive in a body that is slowly dying.” Another explains, ” I barely have the energy to take care of my daily needs, if I shower it’s a miracle, little less brush my teeth or hair.”

 

From a poll on “Worst Symptoms” done in a Lyme Support Group
(Names have been removed)

 * “Hearing loss.. Almost deaf in right ear. Hate having a hearing aide.”

 * “Mind processing.”

* ” Long term fevers and fatigue.”

* “So many, most prominent, fatigue, pain, neuro and muscle pain. Not to speak of brain fog. Sorry can’t say which is worse, they all feel bad all of the time.”

* “My brain will never work the same, have to ask lots of questions, because I can’t follow anymore, or mutitask, or I go crazy if there is too much noise, and I can’t follow anything. I feel like my 93 year old Granddad at 42. I forget what I’m saying or doing, and it takes so much longer to do things.”

* “Seizures (because they are so very scary and have taken my independence), the heart related stuff too. Fatigue (because it makes me unable to do anything physically speaking, even walking to the bathroom sometimes), severe brain fog that has not only wiped out my short term memory, but my long term memories also! I used to play so many songs on the piano, literally hundreds, by memory. Now I struggle to remember just one.”

* “Fatigue and pain with twitching all together.”

* “Pain but the neuropathy is causing my muscles to waste away so very weak and lots of pain from it all….they say I will end up in a wheelchair next if it doesn’t stop and then not able to care for myself…”

 * “Joint pain, fatigue, gastrointestinal issues.”

 * “CFS ,pain and panic attacks.”

* “The one you are dealing with at each given moment?????? For me, it was the loss of usage of arms and legs, the tremors and the pain….but as I said, then you get whacked with anther and taking one day at a time meant getting over that particular symptom for the day. It changes so darn much.”

 

4. FEELING LIKE A BURDEN

With Lyme Disease you end up feeling so sick and weak and dizzy that sometimes you can not perform the daily tasks you need to. Showering becomes overwhelming, getting dressed, brushing your teeth, standing for any length of time becomes hard with the dizziness and pain we experience. Cooking dinner or cleaning house almost impossible. We stop being able to do these things not only for our family but for ourselves. We don’t want to ask for help. This leads to feeling like a burden. Not being able to attend events. Having to constantly cancel with friends or family members puts a strain on all relationships including making you feel like a burden to your own family. Not being able to be a mom or dad and play with your kids is especially hard. The ones you were taking care of now need to stop everyting to take care of you. The guilt it relentless.

5. LYME CAUSES DEPRESSION

Robert C. Bransfield, MD is a psychiatrist who works with Lyme patients. In his article, “Lyme, Depression, and Suicide,” he says that the #1 psychiatric symptom of Lyme Disease is depression. Here are the many reasons for that:

Patients struggle with a multitude of issues, from not being believed, to terrible symptoms, to losing all their loved ones. Just trying “to be” on a normal day is a struggle for Lyme patients. This going on day after day for several years without much support, leads to depression.

Lyme Disease affects multiple organs including one’s brain, (encephalitis, meningitis) endoctrine system, (thyroid dysfuntion) leading to depression and other psychiatric conditions. Dr Bransfield states that, “In my database, suicidal tendencies occur in approxi­mately 1/3 of Lyme encephalopathy patients. Homicidal tendencies are less common, and oc­curred in about 15% of these patients.”

 

From a “Depression Poll” done in my Lyme Support Group
(Names have been removed)

 * “My daughter has severe intractable depression, with severe intractable insomnia with it.”

 * “Severe depression….to the point of suicidal thoughts.”

* “Dealing some days and some days well…under the rock…for my own protection..”

 * “Off the charts depression…..Chronic illness in it of itself causes depression, and then when the lyme manifests itself in our brains its a depression train wreck! oy….have to take antidepressants.”

* “I don’t know of anyone with lyme that doesn’t deal with depression at one time or another. my doc just increased my dosage and its really helped. sick for years and yeats, who would not be depressed that the life they had was over, only to try and start another one with such limitations and still remain optimistic. dealing with insurance, being a burden, not being able to do what ur greatest passion is, watch others do your work.. its a struggle for us all. GOD PLEASE help and bless us all.”

* “It was always with me, looming over me.”

 6. WATCHING OUR FRIENDS DIE

As we are all struggling to survive this disease, Lyme patients have formed a tight community. We all get online and talk to each other every single day. It is the only support or human contact many people get. When you turn on the computer and see you have lost another friend to Lyme Disease, usually at their own hands because they just coulnd’t take it anymore, you’re heart sinks. You want to scream, you want people to notice, you want this disease to be over.

 From a Poll done on “Losing your Friends to Suicide” in a Lyme Support Group:

(Names have been removed)

 * Sidenote~ Notice everyone who answered had experienced losing one of their “lyme friends” to suicide.

 * “Saddened and Scared”

 * “Wishing she could have hung on a bit longer because she had just started treatment a few months before. I’m still crying. I’m crying for the pain she was in for so long and the pain she went through mentally.”

 * “I feel like that was something that I was faced with in the past and could possibly face in the future. I hurt for them. I know how desperate the pain makes you. Just since then I have learned to never carry out rash actions without regard to my future.”

 * “I cry… My heart cries. Because I know all too well exactly why…. Why must we keep suffering. Why. We all are suffering from this and it is so criminal what the CDC an IDSA are allowing to happen. We are dying and will unfortunately continue to die from this until something or someone does something to CHANGE this crucial epidemic.”

* “Sad and frustrated and I wonder how long it takes before we give up. Its so difficult for us to get through each day. My heart breaks and is scares me. I become afraid for all of us.”

* “As the mother of a sick child, I think “Therefore but the grace of God go I.”

* “A piece of me goes with each one. It really does. Even if I didn’t know them personally, it really gets me , because I know the life they have lived, I know the suffering they’ve known, and my heart breaks.”

* “It feels like another piece of my heart is being torn away. With all that we do to bring about awareness and change….it doesn’t seem good enough when we loss a part of our family (Lyme family).”

* “Devastated and hurt…I feel kind of small, insignificant, helpless in not being able to do more…..my prayers and heart go out to the loved ones and to all facing this battle.”

* “Devastated. I’ve cried so many tears for people I’ve never even met in person but came to know through our online Lyme community. I feel so mad because their deaths could have been prevented. Their family and friends didn’t have to loose them! It’s an outcry we can’t get the medical care we need and have to suffer to the point that death seems like the best option.”

 * “Anger & Devastation…..will anyone listen?”

 Let CNN know your feelings on this subject. Please click here to leave your comments for them. 

 

 

Here it goes…

Jenna DredgeHere it goes…

I’ve been wanting to document my journey for a while, but didn’t really know how to go about it. My mom has been pushing me to write a journal for months, so with a lot of pondering, I’ve decided to start a blog. Mostly to help others suffering from the same thing.

My journey began in January 2012. I remember that whole month just not feeling “right.” I was tired, my feet hurt, I was getting headaches every day, my vision was blurred and I was popping Pepto chewables like they were candy. I finally went to a doctor, who was throwing out words like MS, brain tumors and MRI’s. I told her I had a tick bite back in November and that I wanted to be tested for Lyme Disease before I considered those options. She of course told me it was highly unlikely I had it, but said she would do a blood test anyway. Unfortunately it takes a week to get results back, so I left still wondering what the heck was wrong with me.

3 days later I ended up in the ER due to whole right side of my body going numb, and feeling so sick I wanted to die. After talking to the doctor, he told me I was “having a panic attack and it was highly unlikely I had Lyme Disease.”

Read More…

Lyme Life-Rippling Relationships

Lyme Life-Rippling Relationships

5-Rippling Photo1

Josh Cutler is known in the Lyme Disease Community as a group leader in several forums and a pioneer for spreading awareness in news rooms and throughout social media networks. In addition, he is on the comity for the annual Lyme Disease Rally (MayDay Rally) held in Washington D.C. This year the rally was held at Freedom Plaza and Cutler, along with his wife, was very strong activist; spreading awareness and marching down to the capitol with hundreds of others to protest the politics behind treatment of the difficult disease.

Read More…

The ‘Doctors’

“I used to look to doctors for the answers, expecting them to have just the right information”

LymeThrivingThe ‘Doctors’

When it comes to tick-borne illnesses, there is an ongoing stream of complaints about doctors, not just medical doctors, but healthcare providers across the spectrum into ‘alternative’ healthcare providers (OD’s, ND’s, DC’s, etc). There are also many praises sung for others in the same fields of care.

I do not propose that I have experienced it all and know it all, but this being my little soap box of a blog, I share here my thoughts on the ‘Doctors’.

Read More…

Stealthy in Summer-Lyme Disease

Stealthy in Summer-Lyme Disease

Summer is here and as many of us are enjoying the beauty of exploring nature we tend to let go and be care free in the fun spirit of it all. Summer is a time for freedom, a time for camping, swimming, barbeques and flat out fun. Summer is also a time for ticks. That’s right, I said ticks. An insect known to carry a multitude of infections that can cripple and debilitate a person in weeks to years. Some are so impacted by the debilitating illness, the Lyme community has lost lives due to suicide or Lyme-related complications. The tick is a fairly small insect that imbeds itself into the host. Once this phase occurs, it begins to take in the hosts blood and push out its personal blood back into the host. This causes any and all infections the insect carries to be transmitted into the host.

Read More…

Lose Dose Naltrexone (LDN) – Wonder Drug For Lyme Disease & Other Chronic Illnesses?

thumbnailCAQL4QKRLose Dose Naltrexone (LDN) – Wonder Drug For Lyme Disease & Other Chronic Illnesses?

For months I have been coming across mention of the off-label use of a medication – low dose naltrexone (LDN) – and its remarkable usefulness in treating various illnesses, including Lyme disease, MS, cancer, Crohn’s disease, Hashimoto’s thyroiditis, and chronic viral infections such as HIV. Just by Googling “low dose naltrexone” I came across copious testimonials of people who are trying to help others by spreading the word of their sometimes dramatic improvements since adding LDN to their treatment protocols or even as a stand alone treatment (many of them suffering from neurological diseases such as MS, Parkinson’s and/or Lyme disease). Naturally curious as well as circumspect, I decided I would read whatever I could on the use of low dose naltrexone and then consult with my LLMD to see if he has had any experience in treating patients with it. It didn’t hurt to find out that low dose naltrexone has a long history of safety and lack of serious side effects. Read more.

CDC’s & IDSA Treatment Guidelines Encourages Doctors To Underdiagnose & Undertreat

greater-kc-lyme-assoc1

“The purpose of the CDC is to help people, not to harm them… Please remove the link to the IDSA guidelines from your website. Please allow us to get diagnosed and treated adequately.”

KC’s Kathy White, telling it like it is to the CDC

Hello. My name is Kathy White. I had a stroke 12 days ago and am talking to you from my hospital room in Kansas. I got a tick bite in 1998 in Kansas City, Kansas, while I was supervising recess in a grassy area of a schoolyard. I got Lyme disease and babesia and have been sick ever since. I had to quit my teaching job. For the past 14 years, I have been an officer of the Lyme Association of Greater Kansas City. Our organization was formed in 1993. We serve people throughout Missouri and Kansas and also other states. We publish a brochure and a monthly newsletter. We give information to patients, the public, and medical professionals, and education packets to schools. We cooperate with the efforts of the Lyme Disease Association. A major concern of ours is difficulty getting diagnosed and treated. Most doctors in our area are unable to diagnose and treat us or refuse to do so.

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CDC’s Lyme Team Nominated For Disgraceful “Golden Padlock” Award

CALDAAn infamous award and, of course, the CDC has been nominated.  Thank you LymeDisease.org for sharing this bit on information with us.

NEWS: CDC’s Lyme team nominated for “Golden Padlock” award. (It’s not a compliment.)

“This honor acknowledges the dedication of government officials working tirelessly to keep vital information hidden from the public.”

Investigative Reporters & Editors, Inc–known as IRE–has nominated the CDC for its “Golden Padlock” award, recognizing the most secretive publicly-funded agency or person in the United States.

IRE is a journalists’ organization dedicated to improving the quality of investigative reporting.

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North Carolina: Letter Writing Campaign Info

LetterWritingLetter Writing Campaign Info

“Lyme disease does NOT exist in North Carolina.” Have you been told this before? How can we change this perception among the NC medical community? Unfortunately, most doctors are completely unaware of this public health crisis. Those that are rely on insensitive lab testing that only reinforces their perception that Lyme does not exist in our state (despite three counties already declared endemic for Lyme).   One voice cannot change this. 1,000 voices can!

We ask for your participation in the 2013 Lyme Letter Campaign to NC Health Care Providers. You are an NC resident who suffers from Lyme or Lyme-like Illness (or are the friend, family member or caregiver of someone with Lyme). You were initially denied diagnosis and treatment only to subsequently seek the care of a doctor elsewhere. Read more to see how you can participate.

See what’s available in North Carolina.

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