Wednesday, August 27, 2014

Chronic Lyme Disease: Choose Your Dr Wisely




Lyme Literate Doctor vs untrained PCPs

To the PCP (the untrained doctor), your symptoms will boggle their medical intelligence. Blood tests will be of no help to them and may even lead them in the wrong direction. And as the bacteria further spreads throughout your body and your symptoms become sporadic in nature, instead of admitting that they are baffled and treading outside the boundaries of their general practice knowledge, they will turn it around on you with disbelieving tones and body language. At your insistence, they will follow outdated guidelines and declare you "CURED" after just 21-days of antibiotics. They will miss the early window, taking your first visit as Stage 1 and all their efforts will fall in vain to the wayside. You may leave the office more confused than ever, frustrated, or possibly relieved ~ however, your journey is just beginning.

 Now the Lyme Literate Doctor has all of the same basic medical school training ~ however, what makes them stand apart, is the ongoing continuing education that they submit themselves too, conferences that they attend on a regular basis, lyme networks and resources that they are connected to. They have experienced first hand that some patients just do not respond to the 21-day round of antibiotics. They understand the complex intricacies that surround this disease in all stages and offer alternative treatment options. They will do blood work but it is not necessary in order for them to diagnose you. They understand what all your symptoms mean, individually and collectively, they know by your response whether treatment is working or if you need to change protocols. They will believe you from day one and they will never mock you or talk to you in condescending tones. They will never ever call you crazy because they understand that once the bacteria cross the brain barrier, that you are prone to all kinds of neurological symptoms and cognitive failures. Once they diagnose you as having Lyme, they may pursue blood work through a Lyme Laboratory to uncover if any co-infections exist. Mention the word co-infection to your PCP and watch for their reaction. Co-infections can complicate a lyme patients treatment with strange and unusual symptoms. When a Lyme Literate doctor is dealing with a Lyme patient, they know to expect this. Your untrained PCP will become even more baffled and change your diagnosis a dozen times over. They will send you to every specialist under the sun ~ who, if they are not Lyme Literate, will send a note back to your PCP stating that they found NOTHING wrong with you. After countless visits, thousands of dollars spent on medications that didn't work, tests that revealed nothing and energy spent chasing your tail, your doctor will proclaim that you need to see a therapist, that you are depressed and possibly mentally ill.
 Your Lyme Literate doctor will explain things every step of the way, what to expect from the illness and from the treatment that you are taking. When you call or see your Lyme Literate with a symptom concern, they won't be surprised. They may suggest backing off on your dosage to calm the herxing effect that you are having. They will recommend things that foster healing on all levels. Because they understand this disease inside and out. A Lyme Literate doctor is not GOD, they won't be able to give you a time line but they will be able to read your level of healing based on your symptoms and they will be supportive every step of this journey.

So if you or a loved one thinks that they may have Chronic Lyme or have been told that they have Chronic Lyme ~ your next decision is a crucial one. It will make all the difference in the world between how long you remain sick and how soon you get better.

I encourage you to reach out to your State Lyme Disease Websites and Support Groups and if you don't have that information, you can find it at http://whatislyme.com/websites-and-support-groups-by-state/

These groups can be a lifeline! ~ with Angele Rice

©paulajacksonjones2014
Lyme Warrior 24/7/365

Brunswick Times Article: Healthy Living September 2014 Issue

http://www.timesrecord.com/documents/HealthyLivingSeptember2014/Page_013.pdf

For the 2014 September Issue of Healthy Living an article was published about Midcoast Maine Lyme Disease Support Group.  Click the above link to read it in full :)

September 2014 HEALTHY LIVING 13

WISCASSET — The Midcoast Lyme Disease Support and Education Group
meets the last Tuesday of each month at the Wiscasset Community Center from 6-8 p.m.
The meetings began in May and have drawn about 15 people, according to one
of the organizers, Angele Rice of Bath, who was bitten as a 13-year-old but was 30
before being diagnosed. Rice noted that she wasn’t sure what to expect when the
group was launched, but was “glad to see a combination of support people coming
with the person who has Lyme.” While a medical perspective can be important, one of the group’s goals,
according to Rice, is to offer emotional support.
The group seeks to continue to raise community awareness, foster education and advocate on behalf of Lyme patientsin the Mid-coast area.
Paula Jones of Nobleboro has battled late stage neurological Lyme since being
bit in 2009. It was misdiagnosed over and over for the next two years, she said, and
it was only “after seeking a Lyme literate specialist, I spent the next three years in
various stages of Lyme treatment and went into remission April 2014.”
She met Rice through “some local Lyme awareness events and when we discovered that Mid-coast Maine had the second highest rates of Lyme disease in the entire state, we decided something needed

to be done,” she told Healthy Living.
“Awareness, education, advocacy and support. We’re here to raise awareness to our
community not only for prevention but also advocacy and support for diagnosis
and treatment options. We started the support group in May and it has been a
huge source of information, compassion, hope and direction for those dealing with
a disease that boggles most untrained physicians. We have statewide and
nationwide networks of support and information.” Rice explained that many people find it
necessary to go out of state for treatment and Rice is finding that there are many
people — like herself —who may have been infected for a long time but were
misdiagnosed for years.
These meetings are free and always open to the public.
The guest speaker for the Sept. 30 meeting is Patti Corscaden, licensed massage therapist, who will be speaking about therapeutic massage, how it relates to chronic illness and can foster healing.
The group is for anyone who suffers from Lyme disease, thinks they might
have it or may have had it at one point, or has a loved one afflicted with it.
Childcare is not provided and this is a support group setting so organizers ask
attendees to please plan accordingly.
For more information, contact coorganizers
Paula Jones at 446-6447 or
lymewarrior247365@gmail.com, or
Angele Rice at 841-8757 or

angbet35@gmail.com.
The group has a website with links to support and educational issues at
www.midcoastlymediseasesupport.blogspot.com, as well as a Facebook page,
Midcoast Lyme Disease Support.





Tuesday, August 19, 2014

August Support Group Meeting Update PLEASE READ!


If you need to contact myself or Paula please feel free.  My email (Angele) is: angbet35@gmail.com
and Paula's email is:  lymewarrior247365@gmail.com

October Philadelphia Lyme Protest

"Every year The Mayday Project holds a protest to raise awareness about Lyme disease and to demand that the IDSA change their flawed testing and treatment guidelines so those suffering can get the treatment they need to overcome this disabling condition. We will be protesting this October at the IDSA’s annual conference in Philadelphia, PA.
We are turning IDWeek into LDWeek! Oct.11th is about getting a chance to show up when all the Doctors who need Lyme education are around! Join us and help us turn the tide!"
"Join Us As We Protest The IDSA!
We will be protesting the IDSA during their annual conference in Philadelphia, PA. Please join us in letting the IDSA know that we won't back down until they change their treatment guidelines for Lyme patients.
The event will take place October 11, 2014 from 8:00 am - 3:00 pm at the Philadelphia Convention Center."









Just Click here!
www.themaydayproject.org
Facebook Event Page with continuous Updates
https://www.facebook.com/events/1506735772893178/1524659411100814/?notif_t=like

September 6th Bethel Maine Lyme Awareness Conference



Facebook Event page is:  https://www.facebook.com/events/855192697838096/
Contact Rhonda or Diane for more details!