Brunswick Support Group Meeting

Boothbay Lyme Disease Support Meeting Reminder

Reminder

Giving Tuesday

#GivingTuesday is upon us and in the spirit of giving, we hope that you will consider supporting Midcoast Lyme Disease Support & Education (MLDSE) and our efforts in the many ways that we raise awareness, educate communities and support those afflicted with Lyme and Tick-borne disease with our free resources.

Did you know that 100% of all donations to #MLDSE go to local Lyme Disease Awareness efforts?

Did you know that 100% of donations to the Midcoast Lyme Aide fund stay local helping local people get the help that they need?

Did you know that members of #MLDSE donate 100% of their time and energy to helping others with free resources find their way back to health??

• You can donate directly ~ MLDSE 4 Mills Rd (#120), Newcastle, ME 04553
• You can click on our Donate Button:
  
  

   
• Need a tax deduction? We’re a nonprofit 501c3 ~ Make a Year End Donation! {MLDSE/EIN#47-2502113}
• Donate to the Midcoast Lyme Aid fund:  Click Here
• When you shop on AmazonSmile, choose us to be your charitable organization:  http://smile.amazon.com/ch/47-2502113 
  
• Share us with family and friends www.mldse.org

Science News

http://www.prohealth.com/library/showarticle.cfm?libid=29652 

 

Study Shows that Mast Cell Activation (a Disorder Common in Lyme Disease) Causes Depression

By Georgin-Lavialle, et al. • www.ProHealth.com • November 23, 2022

 Mast cells' involvement in inflammation pathways linked to depression: evidence in mastocytosis

Editor’s Note: Mast Cell Activation Disorder (or mastocytosis) has, of late, become increasingly implicated in chronic degenerative diseases of all kinds. Therefore, this study’s assertion that mastocytosis is rare is most likely inaccurate, as researchers have been finding it to play a major role in the symptoms of many illnesses, including Lyme disease, chronic fatigue syndrome and fibromyalgia. For more information, see Lawrence B. Afrin’s book, Never Bet Against Occam (2016).

Abstract

Converging sources of evidence point to a role for inflammation in the development of depression, fatigue and cognitive dysfunction. More precisely, the tryptophan (TRP) catabolism is thought to play a major role in inflammation-induced depression. Mastocytosis is a rare disease in which chronic symptoms, including depression, are related to mast cell accumulation and activation.

Our objectives were to study the correlations between neuropsychiatric features and the TRP catabolism pathway in mastocytosis in order to demonstrate mast cells' potential involvement in inflammation-induced depression.

Fifty-four patients with mastocytosis and a mean age of 50.1 years were enrolled in the study and compared healthy age-matched controls. Depression and stress were evaluated with the Beck Depression Inventory revised and the Perceived Stress Scale. All patients had measurements of TRP, serotonin (5-HT), kynurenine (KYN), indoleamine 2,3-dioxygenase 1 (IDO1) activity (ratio KYN/TRP), kynurenic acid (KA) and quinolinic acid (QA).

Patients displayed significantly lower levels of TRP and 5-HT without hypoalbuminemia or malabsorption, higher IDO1 activity, and higher levels of KA and QA, with an imbalance towards the latter. High perceived stress and high depression scores were associated with low TRP and high IDO1 activity.

In conclusion, TRP metabolism is altered in mastocytosis and correlates with perceived stress and depression, demonstrating mast cells' involvement in inflammation pathways linked to depression.

Source: By Georgin-Lavialle S1,2,3 Moura DS1,2,4, Salvador A5,6, Chauvet-Gelinier JC7,8, Launay JM9, Damaj G10, Côté F2, Soucié E11, Chandesris MO1, Barète S1,2, Grandpeix-Guyodo C1, Bachmeyer C3, Alyanakian MA12, Aouba A13, Lortholary O1,14, Dubreuil P1,11, Teyssier JR15, Trojak B6,7, Haffen E15,16,17, Vandel P17,18, Bonin B7,8; French Mast Cell Study Group, Hermine O1,2,13, Gaillard R1,5,6,19. Collaborators. Mast cells' involvement in inflammation pathways linked to depression: evidence in mastocytosis. Mol Psychiatry. 2016 Nov;21(11):1511-1516. doi: 10.1038/mp.2015.216. Epub 2016 Jan 26.

Wiscasset Support Group Meeting Reminder

In the News

http://lymelife.bangordailynews.com/2016/09/05/a-lesson-in-lyme/the-unadulterated-and-unpleasant-truth-about-lyme-disease/

MLDSE Awareness Table

The Unadulterated And Unpleasant Truth About Lyme Disease

September 5, 2022

By Hannah Barry

 

  As I was beginning my research and gathering information for what will now be my next post (on Lyme treatments and protocols) I realized that some of the information would be much better understood if I first prefaced it with a full Lyme and associated coinfections overview. How fun does that sound? Here we go.
What is Lyme disease? Lyme disease is a bacterial infection. More often than not, Lyme disease is acquired via the bite of an infected deer tick. Though cases of Lyme have been reported in all states, the Northwest and Upper Midwest are most largely affected by the growing epidemic. A tick going unnoticed can remain on your body for hours to days at a time, engorging itself on your blood as it transmits the spirochetal bacterium (Borrelia burgdorferi) into your bloodstream.
How do you know if you have Lyme disease? If you’ve been bit by a tick, you may start to experience symptoms anywhere from 2-30 days after the initial bite. Lyme disease is a clinical diagnosis, meaning that your treating physician will take into account your past medical history and your current symptoms. Additional laboratory tests can be run to determine a Lyme diagnosis, though many are not completely reliable.
What tests are out there? There are direct and indirect tests that can be used to test for Lyme. Direct tests (such as the Lyme Dot Blot Assay (LDA) or the Lyme Multiplex PCR) look for the presence of B. burgdorferi antigens or nucleic acids. Indirect tests (such as Elisa, IFA and the Western Blot) look for the patient’s immune response to B. burgdorferi. It is important to note that not all ticks are infected, however, ticks themselves can be tested for B. burgdorferi using a test called PCR.
What are the symptoms of Lyme disease? Firstly, there are three major stages of Lyme disease, each with their own varied and increasing set of symptoms: Stage 1- early localized infection (1-4 weeks), Stage 2- early spreading of the infection (1-4 months) and Stage 3- Late/chronic persistent infection (4+months).
Symptoms are as follows:
Stage 1

• Bulls eye rash (though it only occurs in less than 40% of patients)
• Flu like symptoms
• Lack of energy
• Fatigue
• Headaches
• Muscle and joint pain
• Stiff neck
• Swollen lymph nodes

Stage 2

• Extreme fatigue
• Rashes
• Migrating pain
• Weakness and/or numbness in the arms of legs
• Twitching muscles
• Severe or recurring headaches
• Fainting
• Poor Memory and concentration problems
• Irritability
• Vision problems
• Internal buzzing feeling
• Heart palpitations
• Panic attacks
• Mood disorders

Stage 3

• Swelling and pain in the joints
• Numbness and tingling in the extremities
• Severe fatigue
• Insomnia
• Bells Palsy (partial paralysis of the face)
• Getting lost in common places
• Problems speaking, word retrieval problems, word block
• Migrating pain and symptoms
• Heart damage, pericarditis
• Meningitis
• Depression
• Panic Attacks
• Bladder problems
• Tinnitus, ear ringing or feeling of fullness
• Poor balance
• Shortness of breathe
• Rib and sternum soreness
• Fevers/sweats
• Vertigo
• Upset stomach and GI problems
• Burning and stabbing pains

Just to name a few.
Now if left untreated, Stage 3 Lyme can progress past the blood brain barrier, into the tissue of your central nervous system and wreak all kinds of havoc with your brain. This can be called Neuro-Psychiatric Lyme or, to get more technical, Lyme Neuroborreliosis or Lyme Encephalopathy. Symptoms of this stage are as follows:

• Simple and complex attention
• Slow processing-visual and auditory
• Visual-spatial difficulties-e.g. trouble finding things, getting lost
• Auditory processing disorders
• Visual processing disorders
• Sensory integration disorders
• Short-term and working memory difficulties
• Word-finding, word generation and communication difficulties
• Decline in executive functions-planning and organization
• Confusion, decline in overall intellectual performance
• Anxiety, often with panic attacks
• Depression
• Irritability/rage attacks/impulse dyscontrol/violent behavior/oppositional defiance disorder
• sleep disorders
• Rapid mood swings that may mimic bipolarity (mania/depression)
• Obsessive compulsive disorder (OCD)
• Hyperactivity
• Autism Spectrum-like disorders
• Antisocial disorders
• Eating disorders

And more severe Neurological symptoms associated with late-stage Lyme:

• Progressive dementias
• Seizure disorders
• Strokes
• Motor neuron disease, similar to ALS
• Gullain-Barre-like syndrome
• Multiple sclerosis-like syndrome
• Other extrapyramidal disorders
• Visual disturbances or loss

What are the coinfections that could potentially come along with Lyme? It is important to understand that from just one tick bite you can get many tick-borne diseases, and the longer the tick stays attached, the greater the risk of disease will be. It is also important to note that it is possible to have one of the coinfections without having Lyme disease, though it is rare. Each coinfection has to be individually and clinically diagnosed and as it varies from patient to patient, symptoms could be quite diverse. Here is a list of some of the coinfections that you may find yourself affected by if you’ve been bit by a tick (with or without Lyme):

• Babesiosis
• Bartonellosis
• Borrelia Miyamotoi
• Anaplasmosis
• Ehrlichiosis
• Colorado Tick Fever
• Powassan Encephalitis
• Q Fever
• Rocky Mountain Spotted Fever
• STARI (Southern Tick-Associated Rash Illness)
• Tick paralysis
• Tularemia
• Rickettsiosis

Who can be affected by Lyme disease and its coinfections?Everyone is at risk, from babies to elderly folks. It has been shown that even babies still in the womb can become infected-Lyme DNA has been found in breast milk, and the Lyme bacterium can cross the placenta which may result in fetal death.
What you can do to protect yourself: During the Spring, Summer and Fall it is important that, upon entering tick country, your dressed appropriately-light colored long sleeve shirts, pants, shoes that cover your feet, a hat and tuck your pants into your socks. No, it is not meant to be flattering. In addition, always walk in the middle of pathways, use known tick repellents, always check your skin and all hair areas thoroughly. Pets and all gear (example: deer hunters) should be fully checked for ticks before put into cars or brought into houses.
How to properly remove a tick:

1. Use tweezers or forceps
2. Grasp the tick mouthparts close tot he skin
3. Avoid squeezing the tick, for it may spread infect fluids
4. Pull the tick straight out, do not twist or attempt to burn the tick
5. Save the tick (you may want to have it tested)
6. Wash hands with soap and water
7. Apply antiseptic to bite site

Fast Facts:

• According to the CDC, Lyme disease is the fastest growing vector-borne, infectious disease in the United Sates
• The number of cases reported annually has increased nearly 25-fold since National Surveillance began in 1982
• There are 5 subspecies of Borrelia burgdorferi, over 100 strains int he US, and 300 strains worldwide
• CDC estimated cases per month: 25,000 Cases per week: 5,770 Cases per day: 822 Cases per hour: 34
• There are no tests available to prove that the organism is eradicated or that the patient is cured
• Fewer than 50% or patients with Lyme disease recall a tick bite
• 40% of Lyme patients end up with long term health problems
• Fewer than 50% of patients with Lyme disease recall a rash
• Up to 50% of ticks in Lyme-endemic areas are infected

For more information: You can visit Igenex Inc., ILADS.org, Lyme Disease Association.org, or (if you’re in Maine) you can visit  the Midcoast Lyme Disease Support & Education online.
Much of this information that I have here I was able to get directly from the brochures and pamphlets in the information packet from the 2nd Annual Midcoast Lyme Disease Support & Education Conference that was held here in Maine back in April. I myself was not able to attend, due to being sick with Lyme (go figure). However, I was able to order a copy of the packet of info and a DVD of the conference proceedings. It has been invaluable in furthering my knowledge of Lyme.
Now next time, finally, I will address treatment protocols, both antibiotic, natural, etc.

Explore our website for further information, local resources, and support.

Remembering Lyn Snow

Our December Rockland support meeting will be open to the public
 and run slightly different than usual ~
Please join us on Tuesday, December 13 from 6-8pm, as we will be "Remembering Lyn Snow"

Read this Events Press Release Here:
https://bangordailynews.com/community/remembering-lyn-snow/?ref=inline 

Daytime Support Meeting Reminder

MLDSE in the News!

http://www.boothbayregister.com/article/resources-lyme-disease-victims-now-community-center/78650#.WCuVdgZY9MA.facebook

Resources for Lyme disease victims now at Community Center

By

JANE CARPENTER, News Contributor

Posted:  

Tuesday, November 15, 2022 - 7:30am

Boothbay Register Newspaper

 

 Did you know that many of our neighbors are suffering from the effects of Lyme disease and the Midcoast is the center of the current epidemic in Maine?
According to Paula Jackson Jones, president and co-founder of Midcoast Lyme Disease Support & Education (MLDSE), many victims of tick-borne diseases may not even know the reason they are feeling so ill. As an example, the telltale bull’s eye rash only presents about 50 percent of the time and the most frequently administered test is only reliable about one third of the time, according to the Centers for Disease Control.
A Lyme disease victim herself, Jones explained the frustration of dealing with the scarcity of information about her illness. After being bitten by a tick in 2009, she was not diagnosed until two years later when her symptoms became very severe.  With her disease in remission, she founded MLDSE with Angele Rice of Bath in 2014. In May, 2016 the group was named the official Maine partner of the National Lyme Disease Association.
Jones explained that the disease is actually bacteria which cause a number of infections with clusters of symptoms that are difficult for the medical community to diagnose because the range and severity are so broad. As a result, many patients are undiagnosed or misdiagnosed and the bacteria that cause the disease remain in their systems. Symptoms may mimic neurological, cardiac/pulmonary, gastrointestinal diseases and even behavioral issues.
Fortunately, according to Jones, there is now a blood test that is highly accurate (98.6 percent) in showing if there is a current or previous infection.
Those who have the disease may be suffering over a long period of time from fatigue, aches, chest pains, fever and other symptoms. According to the CDC, the average patient will see five doctors over almost two years before being diagnosed with the disease. Along the way, they may be abandoned by family members and friends who do not believe that the vague symptoms are real.
Among diseases caused by the bite or touch of an infected entity (“vector-borne”), the national CDC states that Lyme disease is the fastest-growing infectious disease in the U.S.
Half the ticks in our area are believed to be infected with the disease and it may be transmitted by a mosquito bite or as some physicians believe, through sexual contact with an actively infected person, according to Jones.
To assist Boothbay area residents, the Community Center is lending its offices to MLDSE on the third Thursday of every month for what Jones calls “Our whole package, including information about the local network of doctors and experts, advocacy and support resources. We will provide whatever support is needed.”  The hours are 6 to 8 p.m. and the center is closed to all other activity during that time to ensure privacy.
“(Attendees) can either be part of a group or meet one-on-one with our staff. You’re going to find your ’village’ because we know exactly how you feel.”  Lyme disease sufferers and their families can also set up appointments or receive more information by calling Angele Rice at 207-841-8757, Paula Jackson Jones at 207-446-6447 or emailing: info@mldse.org.

Ben Berkowski, member, and Paula Jackson Jones, president of Midcoast Lyme Disease Support & Education, provide advice to area victims the third Thursday of every month from 6 to 8 p.m. at the Boothbay Harbor Community Center. JANE CARPENTER/Boothbay Register

Boothbay Lyme Disease Support Meeting

Mental Health Workshop

 

Lyme disease workshop for mental health clinicians planned

BRUNSWICK — Midcoast Lyme Disease Support & Education is hosting a workshop for mental health clinicians titled Psychotherapy in the Era of Lyme Disease on Friday, Dec. 2, from 9 a.m. to 1 p.m. at Mid Coast Hospital, 123 Medical Center Drive, Brunswick.
This workshop will offer tools for assessment and strategies for treatment as well as the opportunity for dialogue about the roles and ethical obligations of mental health clinicians in circumstances where complex medical disagreements prevent the diagnosis and treatment of Lyme disease.
Presenters will be writer, clinical social worker, and retired attorney and mediator Jane Sloven, and clinical social worker Leslie Abrons.

The cost for this workshop is $40. and space is limited. To sign up, contact Paula Jackson Jones at (207) 446-6447 or paula@mldse.org.

http://www.timesrecord.com/news/2016-11-10/Front_Page/Lyme_disease_workshop_for_mental_health_clinicians.html 

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Boothbay Support Group Meeting Reminder

WEBSITE UPDATE

We have updated our website.

Please take time to 

explore some new tabs,

information, and resources.

Damariscotta Daytime Support Group

Rockland Guest Speaker

October Events

Lyme Disease: A Hard Road to Diagnosis and Recovery

 

"Dr. Ann Corson knows firsthand what a profound challenge Lyme can be. Corson was an emergency room physician who became an expert in tick-borne diseases after her son contracted Lyme in 2001.
Today, Corson specializes in treating the tough Lyme cases other doctors aren’t able to resolve. She uses herbs, homeopathics, lifestyle changes, and other unconventional techniques. She is a member of the International Lyme and Associated Diseases Society (ILADS), a group that is often at odds with the Infectious Disease Society of America (IDSA).
Epoch Times talked to Corson about her experience with treating Lyme disease, and why the standard of care fails so many patients. Answers are edited for clarity and brevity."

Click to read this article here:  http://www.theepochtimes.com/n3/2153109-lyme-disease-a-hard-road-to-diagnosis-and-recovery/ 

 
"Epoch Times: One story I read talked about a woman who had to see 10 doctors before she found out she had Lyme disease. What makes Lyme so hard to diagnose?
Dr. Corson: That’s very common, and it’s because the tests they use are very, very poor. The ELISA test is the first screening, and it misses two thirds of the people that have Lyme, and the antibody response is highly variable. 
Every system in the body is affected by Lyme disease. It’s a multisystem illness. It can manifest differently in different people.

 

Lyme disease is not the infection of just one organism. If you find a tick, it should be removed properly. (Steven Ellingson/Shutterstock)

Lyme disease is not the infection of just one organism. Vector borne diseases come in groups. Ticks, mosquitoes, biting horseflies and a lot of other bloodsucking insects inject all kinds of garbage into the body. They give you not only Borrelia burgdorferi, they give you Babesia, Bartonella, and Ehrlichia [co-infections]. They give you all kinds of viruses, parasites, nematodes, you name it. People actually have a polymicrobial infectious disease.
Lyme damages immune system function. It disables important parts of the immune system so the body isn’t able to fight against a lot of other common chronic infections. That’s why people with chronic Lyme disease often have chronic Epstein Barr infection, chronic CMV infection, chronic herpes infection, and chronic shingles."

Mark You're Calendars!

Rockland Lyme Disease Meeting Reminder

Tick Checks!

Fall is approaching and the ticks are still here!!
Don't let those beautiful colors and cooler days/nights fool you!

Do your daily tick checks and remember,
PREVENTION IS KEY TO BEING TICK-FREE!!!

 

Brunswick Lyme Disease Support Meeting

Union Fair 2016 Recap

Why We Do What We Do...

Day 5 at the Union Fair ~ Midcoast Lyme Disease Support & Education ~ raising Awareness,  fostering Education,  Advocating for change and providing community Support to those affected by Lyme and tickborne disease. 

WHY? Because WE share a very common thread:

"I really was sick, so very sick and my doctor didn't believe me, didn't know how to help me.   Instead, they passed me around from doctor to doctor, specialist to specialist until one day, one very special amazing day, I met my Lyme Literate provider.

I was listened to...

I was heard...

I was validated...

I wasn't crazy...

I was saved...

I now had a plan...

I found support...

I had a new sense of self, that I was actually going to survive this nightmare..."

If this is you or someone that you know, please get them in touch with us.  We have resources, we have support, we have answers and we can give them hope ~ 

Midcoast Lyme Disease Support & Education

Paula Jackson Jones (207) 446-6447

Angele Rice (207) 841-8757

Email:  midcoastlymediseasesupedu@gmail.com

Web:    www.midcoastlymediseasesupport.blogspot.com

#Lymestrong

Wiscasset Lyme Disease Support Group Meeting Reminder

Union Fair: August 20-27th

     Today was Senior Citizen Day at the Union Fair and to say that our booth was busy would be an understatement!!
With senior citizens one of the leading age groups for high # of cases of Lyme Disease and with Anaplasmosis and Babesia on the rise here in Maine ~ there were lots of stories, questions and concerns that were met with answers, direction, support options and a newfound sense of hope.
For these seniors to learn that treatment is still an option and that there are Maine doctors who can help them, it was like getting a new lease on life!

My volunteer helper today, Benny Borkowski and I were met at our booth at 10am by a dozen or so folks just waiting for us to open up. As we were setting up, we were flooded with conversations. As we began to address each question and concern, we noticed another crowd layer closing in on us and before we knew it, it was 2p and we had been standing, talking and giving support nonstop since 10a!!
I had a gentleman approach me with my business card in his hand. After he told me the story of his friend who was suffering terribly from Lyme, he looks at my card and asks me if Dana was my husband. When I said Yes, his response was, "GOD bless you for everything that you are doing. I know your family and I know your story. I know what you've been through with your lyme fight and I want you to know that what you're doing is making a difference. GOD bless you for putting yourself out there and being a resource for helping folks" and then he shook my hand and gave me a hug.
People needed to know that they don't have to suffer with these symptoms, that there are Maine doctors who are very knowledgeable about Lyme and tickborne disease ~ diagnosing and treating.
Engaging with these folks, listening to their stories and empowering them with hope and knowledge is beyond words.
That's when hugs and tears say it all <3
If you know someone who is suffering from Lyme and tickborne disease, someone who has been treated but is still sick, someone who is questioning their test results or someone who is struggling to get tested, diagnosed or treated ~ contact us.

To View Current Daily Times That We Are At Our Booth Please Check Our Facebook Page!

We are a free resource here in Midcoast Maine with statewide and nationwide connection.