#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
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.
The Unadulterated And Unpleasant Truth About Lyme Disease
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
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:
Use tweezers or forceps
Grasp the tick mouthparts close tot he skin
Avoid squeezing the tick, for it may spread infect fluids
Pull the tick straight out, do not twist or attempt to burn the tick
Save the tick (you may want to have it tested)
Wash hands with soap and water
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.
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
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
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.