PA Lyme will be hosting a Virtual Lyme Impact Series, via Zoom webinar.

Due to the Coronavirus, all PA Lyme Support group meetings in May are cancelled.  In their place, PA Lyme will be hosting a Virtual Lyme Impact Series, via Zoom webinar.  Our second session is Tuesday, May 26, at 7-8:30 pm.  REGISTRATION BELOW IS REQUIRED.  Dr. Joseph Burrascano, MD. will cover COVID+Lyme, new Borrelia species, Disulfiram, food sensitives, and more.Topic:                   Living With Lyme Disease in a Fast-Changing World.  Managing your health while navigating a shifting landscape.Speaker:              Joseph Burrascano, MDWhen:                  Tuesday, May 26th from 7-8:30 pmRegistration is limited to first 100 people.  To register click here.  If you miss the cutoff for registration please go to the PA Lyme Resource Network Facebook Page to see a livestream of the webinar.
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PA Lyme Resource Network
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www.palyme.org

Fibromyalgia Thoughts #3

It’s been six months since I’ve had a bad flare, the freedom from severe pain has allowed me to do more chores around the house. I bought a Bona Microfiber mop and go around singing “me and my mop”! Crazy I know but it’s been years since I’ve done regular cleaning let alone enjoyed it.

I’ve learned to not let Fibromyalgia define me, I’m a whole person. One with a life that includes Fibromyalgia, Mental Illness, other chronic illnesses, a four-legged child, a husband, and a personal life.

I’m learning about the importance of taking care of my immune system, taking supplements for the first time. Eating a bit healthier and losing a few pounds.

Self-care is in the front of my mind every day when I have a flair it takes a back seat but now I make sure there is a least one thing I do for myself to make me feel better. Maybe it’s a foot soak, I’ve bought new make-up even though I haven’t had a chance to wear. I’ve upgraded my skincare regimen and I’m worth it.

Another big change in self-care is we have premade food delivered three days a week and every other week I have premade smoothies delivered. I have found it doesn’t cost us much more, we’re eating healthier and saving a lot of time. We’ve also spent more time in the kitchen together. Since all you have to do is cook in the pan we can take turns fixing dinner. Something I haven’t done in years.

I know a flare can come at any time, I’ve been diagnosed with a new immune disorder and my mental health thankfully is stable. I can’t let my illnesses consume my thinking, my life, and my writing.

I have varied interests, my flowers, tomato plants, photography, my bird garden, and expanding my mind. All of which I get to enjoy now and don’t take for granted.

Melinda

 

Psychiatrists fear ‘tsunami’ of mental illness after lockdown

By Philippa Roxby BBC Health reporter

16 May 2020

Psychiatrists are warning of a “tsunami” of mental illness from problems stored up during lockdown.

They are particularly concerned that children and older adults are not getting the support they need because of school closures, self-isolation and fear of hospitals.

In a survey, psychiatrists reported rises in emergency cases and a drop in routine appointments.

They emphasised that mental-health services were still open for business.

‘Patients have evaporated’

“We are already seeing the devastating impact of Covid-19 on mental health, with more people in crisis,” said Prof Wendy Burn, president of the Royal College of Psychiatrists.

“But we are just as worried about the people who need help now but aren’t getting it. Our fear is that the lockdown is storing up problems which could then lead to a tsunami of referrals.”

A survey of 1,300 mental-health doctors from across the UK found that 43% had seen a rise in urgent cases while 45% reported a reduction in routine appointments.

One psychiatrist said: “In old-age psychiatry our patients appear to have evaporated, I think people are too fearful to seek help.”

Another wrote: “Many of our patients have developed mental disorders as a direct result of the coronavirus disruption – eg social isolation, increased stress, running out of meds.” 

Dr Bernadka Dubicka, who chairs the faculty of child and adolescent psychiatry at the RCP, said: “We are worried that children and young people with mental illness who may be struggling are not getting the support that they need. 

“We need to get the message out that services are still open for business.” 

Dr Amanda Thompsell, an expert in old-age psychiatry, said using technology to call a doctor during lockdown was difficult for some older people.

They were often “reluctant” to seek help, and their need for mental-health support was likely to be greater than ever, she added. 

‘Clear priority’

Mental-health charity Rethink Mental Illness said the concerns raised were supported by evidence from people living with mental illness.

In a survey of 1,000 people, many said their mental health had got worse since the pandemic had started, due to the disruption to routines that keep them safe and well.

“The NHS is doing an incredible job in the most difficult of circumstances, but mental health must be a clear priority, with investment to ensure services can cope with this anticipated surge in demand,” said the charity’s Danielle Hamm.

She said it could take years for some people to recover from the setbacks.

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Electro Convulsive Therapy *Perspective after 20 Treatments*

This is a repost for Mental Health Awareness Month. Please be aware and watchful during this Covid 19 time, more than ever about how down someone’s conversation is. If you are feeling suicidal please reach out to a medical professional. If you think you will hurt yourself or others go to the hospital right away. Hospitals are prepared to help during this time as always.

Melinda

This is a repost from 2015 I thought might help someone today. If you’ve reached the bottom and not sure where to turn, please talk to your doctor about all of your options. ECT has allowed me to celebrate my 56th birthday this year. 

I’ve had 20+ ECT treatments. The treatments are necessary when I hit bottom becoming delusional and suicidal. I hope to shine a light on ECT and dispel the myths. Please keep an open mind,the procedure may save your life. In my experience a Psychiatric facility associated with a respected hospital is far superior to chain facility’s. This post is based on top facility in area. I will share the experience with the worst in another post.

I’ve had treatment in-house and outpatient. For me a crisis with suicidal thoughts are best handled in-house with 24 hour care.  I’ll share step by step how ECT is handled at UTSW in Dallas.

You arrive and change to a gown, the RN calls you to patient area to make sure your meds have not changed. UTSW has strict processes to prevent mistakes. You will be asked you name many times. The RN prepares an IV in your arm which is used for a short acting  anesthesia and muscle relaxer.

When it’s your turn, you walk into a small operating room. There you will see your doctor, several RN’s and anesthesiologist You meet everyone, again double checking you ID bracelet. They ask if you have questions. Usually they are answered by doctor prior to treatment. The anesthesiologist will ask a couple of questions about allergy’s.

You lay down in hospital bed, your heart is monitored throughout. The doctor is logging type of ECT. Usually the ECT machine is right by your head. The RN will take your socks off so your feet can be seen. The movement of the foot tells the doctors you had seizure.

A tech is next to you with an oxygen mask, being claustrophobic I ask if he’ll wait till last-minute to put it on. The muscle relaxer is inserted in IV to allow time to work. The doctor will place ECT “head-gear” on. You will also be given a mouth guard. A RN or tech will take doctors instructions on where to place the electrodes.

You will have your arm band checked several times. I love the quality process UTSW University has in place. The head RN will ask if everyone is ready to time out. They will run through who the patient is, what type of ECT having and is everyone ready.

The Anesthesiologist injects, you falls right to sleep. The procedure only takes minutes. When you wake up you have a RN assigned to your recovery They usually juggle a couple of people. You may get some juice for your dry throat. Once all the effects have worn off and IV removed, you can usually get dresses and walk around so RN can see you’re ok. You’ll receive follow-up instructions. Sign the release paperwork and the RN talks to who will drive you home. No driving yourself after ECT.

Typical side effects, jaw hurts from the seizure, may have headache and lethargic from meds in IV. It takes significantly longer to get you ready than perform the treatment.

A couple of notes: there are several positions doctors can use for ECT treatment. I think most common are Unilateral and Bilateral. I’ve had both and prefer Unilateral. You may have to do more treatments to feel improvement however you don’t lose as much short-term memory.

Bilateral treatment has its benefits, it works faster. You may lose some short-term memory. When I say short-term memory, memories right before treatment and right after.

In the DFW area UTSW/Zale is where you want to go if having ECT or staying in-house.

If you have questions please leave in comments.

XO  M

TOUCHED BY LYME: Resources to help you hit the ground running

Dorothy Leland avatar

Dorothy Kupcha Leland

27 SEP 2018

When you are first learning about Lyme disease, it can be hard to know which way to turn. Here are some links to get you started.

General information

www.lymedisease.org  LymeDisease.org gives info about ticks, Lyme disease, co-infections, prevention, risk maps, downloadable brochures, blogs, news and events. If you are wondering if you might have Lyme disease, see our symptom checklist, for a printable PDF you can share with your healthcare provider.

Looking for a Lyme-literate doctor? See our physician directory here.

In addition to its website, LymeDisease.org also publishes a quarterly digital journal, The Lyme Times, free to members. (Click here to join.) We post Lyme-related news on Facebook and Twitter and maintain a network of state-based online support groupsSign up for our free email newsletters.

MyLymeData is LymeDisease.org’s survey tool that tracks patient progress over time. It allows people to quickly and privately pool information about their Lyme disease experiences. When large amounts of data are combined, we can see patterns that help us determine which treatments work best. Add your Lyme data to MyLymeData to help find a cure for Lyme disease.

ILADS–International Lyme and Associated Diseases Society. Professional organization for doctors who treat Lyme disease. Lyme info, educational videos, downloadable brochures.

LDA–Lyme Disease Association. Lyme information, doctor referral site, annual Lyme scientific conference.

Lyme Disease: The Basics–free PDF of book. Published by the Lyme Disease Association of Southeastern Pennsylvania.

Children and Lyme disease

Basic info about children with Lyme disease 

Gestational Lyme disease

Lymeparents online support group 

LymeAid4Kids–Financial assistance for Lyme treatment for those under age 21.

Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.

LivLyme Foundation–Financial grants for children with Lyme disease (under 21).

When Your Child Has Lyme Disease: A Parent’s Survival Guide (book) by Sandra Berenbaum and Dorothy Kupcha Leland.

Healthy Mom Best Prescription for Healthy Baby (The Lyme Times)

PANS/PANDAS

New England PANS/PANDAS Association

PANDAS Network

ACN Latitudes

Moleculera Labs

Ticks

How to protect yourself from ticks

What do you do if you get a tick bite?

TickEncounter Resource Center—University of Rhode Island

Tick testing—There are various places to get ticks tested. Here’s one.

Other Lyme-related symptoms & issues

Lyme carditis and heart block

Lyme disease and cognitive impairments

Gastrointestinal manifestations of Lyme.

Psychiatric manifestations of Lyme.

Lyme and multiple sclerosis 

Lyme and Morgellons

Lyme and allodynia 

Medical marijuana and Lyme disease 

Mold

Lyme and mold 

Survivingmold.com

Dealing with Lyme disease and mold illness at the same time

How to donate blood and tissue for Lyme research

Lyme Disease Biobank

Lyme and pets

Basic information about Lyme and pets

Parasite prevalence maps Educational website includes a US map down to the county level, showing where dogs have tested positive for Lyme, anaplasmosis, erhlichiosis and other diseases. Also, information about protecting your pet from tick-borne diseases.

CAPC  The Companion Animal Parasite Council has comprehensive information about how to protect your pets from ticks and other parasites.

Books

Lyme: The First Epidemic of Climate Changeby Mary Beth Pfeiffer.

Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease, by Dr. Richard Horowitz.

How can I get better? An Action Plan for Treating Resistant Lyme and Chronic Disease, by Dr. Richard Horowitz.

Conquering Lyme Disease: Science Bridges the Great Divide, by Brian A. Fallon, MD, and Jennifer Sotsky, MD

The Lyme Diet, by Dr. Nicola McFadzean. What to eat while healing from Lyme.

Cure Unknown: Inside the Lyme Epidemic, by Pamela Weintraub.

When Your Child Has Lyme Disease: A Parent’s Survival Guide (book) by Sandra Berenbaum and Dorothy Kupcha Leland.

Film and Video

Under Our Skin, award-winning Lyme documentary film.

Under Our Skin 2: Emergence (sequel)

An archive of Lyme-related news coverage from Fox5NY

Financial assistance:

LymeTAP.com–Lyme Testing Access Program. Financial assistance for Lyme diagnostic testing. (US residents only.)

Needymeds.com–Clearing house for information about various kinds of financial assistance for obtaining medication.

Lymelight Foundation–financial assistance for Lyme treatment for children and young adults through age 25.

Lyme Treatment Foundation–financial assistance for Lyme treatment. No age restrictions.

LivLyme Foundation–Financial grants for children with Lyme disease.

LymeAid4Kids—grants for young Lyme patients (up to age 21).

Ticked Off Foundation—financial grants for Lyme patients over age 26.

Outside of the United States:

Canadian Lyme Disease Foundation

LymeHope (Canada)

Lyme Disease Action (UK)

LymeDiseaseUK

Lyme Disease Association of Australia

Karl McManus Foundation (Australia)

France Lyme

Tick Talk Ireland

Lyme Poland

Association Luxembourgeoise Borréliose de Lyme (Luxembourg)

Onlyme-aktion.org  (Germany)

Lymevereniging (Netherlands)

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .

Related Posts:

  1. TOUCHED BY LYME: Financial assistance for your child with Lyme 
  2. TOUCHED BY LYME: New source of financial aid for Lyme patients 
  3. TOUCHED BY LYME: A quick introduction to Lyme disease 
  4. TOUCHED BY LYME: Need a crash course in Lyme disease? Start here. 

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