Mohawk Valley Lyme Support Group

Website revisions- Many changes have occurred in the past 10 years, since the Lyme Support Group was formed.  COVID had the biggest influence on in person meetings.  During this time,  some of the core people of the group, have either taken a different course, moved, or just gotten tired.  Over the years many people have benefited from this website information and the sharing of their Lyme Disease struggles.  Can you help with maintaining current information on this website?  Please contact mvlymesg@gmail.com if you can.  The requirements are a desire to inform and educate people about LYME infections, treatments and hope.

Special Notices

Monthly Lyme Support Group Meetings will resume in person after a COVID hiatus.  Please email  mvlymesg@gmail.com if you would like to be notified of the next meeting.  Meetings are held the third Sunday of the month, 2 to 4 PM, at the UU Church of Utica on Higby Road, in the first block off Genesee Street. 

Should you get the COVID Vaccine?

One has to weigh the pros and cons, the answer comes down to your own decision.

With Lyme, the patent's immune system is often challenged in responding to an ongoing Lyme infection.  This may be reflected in either an overworked or over active immune system, both of which may affect how the body responds to any additional infection.  The vaccine replicates being infected by COVID, but to a lesser degree, and requires the immune system to respond.  Being of a lesser degree, the COVID shot would probably be less of an inssue than actually getting COVID.  The other option is to try an avoid being infected while the majority population become immune through infection or vaccination.  As fewer people are carrying the virus, there will be less of a chance of acquiring the infection.  We are faced with many choices in life and this is one that only you can make.  

Natural Relief for Lyme Coinfections by Dr Rawls.

Click to download a PDF of the herbal treatments for Lyme Coinfections.

MOLDS

If you are suffering from Chronic Lyme Symptoms, molds may be part of the cause.  click here.

Winter

Ticks still can be active in winter.  There is less of a chance of ticks when we have snow and cold, but if you are out when the ground is bare and the sun is warm, ticks can be active.

Many people start feeling symptoms of Lyme during the winter months, from a previous summer tick bite.  

BASICS

BASICS OF LYME AND TBD

What you need to know now!

Where are ticks?  How do I prevent getting LYME?  What to do when you find a tick attached?  How do I reduce my risks of chronic LYME?  How do I treat Chronic LYME?

CLICK here for more information.

Spread of Lyme

Your LYME and Tick Borne Disease (TBD) information source,

 for the Greater Mohawk Valley 

in Central - New York State, 

established April 19, 2015

To receive the latest LYME information and support, 

Contact / Register 

with the Mohawk Valley LYME Support Group.

When you Register with a FaceTime or Skype id, we will make an attempt to include you remotely in the group meetings.

Check out the Special Events

The spread of LYME disease has increased dramatically since this 2014 report.  Also, this report is according to CDC guidelines which limits which cases may be reported and even those cases are not all reported because of the political issues surrounding the treating of LYME in patients.  

2017 map CDC Lyme reported cases

Contact

Email: MVLymeSG@gmail.com

Website:  www.MohawkValleyLymeSupportGroup.com

Facebook: www.facebook.com/mohawkvalleylyme

Monthly Lyme Group meetings

About

Location and Time of meetings may have Changed.

Please register to receive notice of next scheduled meeting.  

Cancellation notice sent by Email or Text Message (cell phone number required)

LOCATION:  Monthly meetings are usually held in Utica once a month, and for special events.  Please email to find current meeting schedules. Check Schedule for current events and meeting locations.    You may also call the above number for directions and more information.

SERVING:  Mohawk Valley, New Hartford, Whitesboro, Utica, Herkimer, Old Forge, Rome, Remsen, Boonville,  Lyons Falls, Glen Field, and all areas in-between.

LINKS:  LYME has been around for many years and these links will take you to other groups who have been dealing with this health issue.

CONTACTS:  We are a volunteer group, whose members have felt the effects of LYME and would like to help others avoid longterm health issues resulting from a lack of knowledge.  Our group is open to sharing our many years of experience with LYME, doctors and other treatments.  Please email us for the next scheduled meeting.

Ticks are spread each year by migrating birds, establishing new tick colonies throughout their flight path.  We must be prepared for this growing vector of human infections through prevention and rapid treatment of LYME and the co-infections.

Cases

In memory of all those who have suffered with LYME & TBD infections, we tell our stories.

Mohawk Valley LYME Patients

See more of the LYME Patient stories by clicking headings, or select tab - My LYME Story / Local NY LYME Stories.

LYME Patient 8:  

Story has just been posted 2018Mar16

LYME Patient 1: 

My short version would be: Never saw a tick or rash but symptoms were flu like sudden onset Labor day 1988.    R. - Utica, NY

LYME Patient 2:

     I was raised on a farm, spent much of my childhood outdoors and experienced many ticks through my teenage years.      J. - Boonville, NY

LYME Patient 3:

On 8/11/15 , late in the evening I  had a temperature  of 104 degrees and  my body hurt from head to toe.    I,- Frankfort, NY

LYME Patient 4:

Nov. 2016, developed numbness in left arm and then side, by Jan. 2017 also affected right side, and by Feb. Lyme has affected chest / breathing muscles, and required nursing home care.  - Boonville, NY

GRIEVING THE LOSS OF A CAREER TO CHRONIC ILLNESS, LYME

Chronic illness has changed me. It changed the way I see the world and changed my goals. Even if the only goal right now is just to get better, I can’t think of a more noble one than that.

Read Kerry’s previous blog, “The High Cost of Telling Someone You Don’t Look Sick“.

UOS

NOTICE:  Tick testing may save you from a concern about seeking treatment after a tick bite.  

For more information:  http://www.tickdiseases.org/tick-testing/what-is-tick-testing/

A well organized LYME Information website:  http://lyme-basics.com

Antibiotics, Herbals and a Combination of both.

The latest results show that out of 7200 lyme cases, about as many people benefited from Antibiotics as did from a Herbal treatment, with about 12% using both types of treatment.  Many Lyme patients find that Herbals are the only way to sustain a level of functional health after a failure of Antibiotics to reach a full cure.  You may want to contact www.WoodlandEssence.com or www.HawthorneHillHerbs.com for herbal solutions.  There are several other good informational sources for treating Lyme with herbals, books by Dr. Rawls and Stephen Bulhner .  (see resources)

"Under Our Skin".The movie is praised for explaining LYME and what people are experiencing in the process of getting treated.  If you are interested in seeing or having the movie(s)  "Under Our Skin" or the followup movie "Emergence" shown, please email MVLymeSG@gmail.com

SURVEY, LYME Disease.ORG

A LYMEdisease.org project.  MyLymeData uses big data research tools that allow patients—even thousands or tens of thousands– to quickly and privately pool their data to determine which treatments work best. This research begins with you. Simply click on Register Now! to begin

Take the International LYME survey and help the medical community understand the LYME epidemic.  SURVEY

Prevention

PREVENTION: SAWYER TICK REPELLENT

Used to treat outdoor clothing.  Lasts through several washings.  Known to kill ticks also.  In Utica, I have spotted this in Herb Phillipsons sporting goods stores.

https://www.ovguide.com/under-our-skin-9202a8c04000641f80000000092874d5

A Must Read (click here):  A Deep Look at the Symptoms of Six Major Lyme-Related Infections

"..the use of ineffective antibiotics against bacteria [is like] trying to kill dandelions with a lawnmower. "

Valuable Info

We hope this website will provide some valuable information which may help you to have a healthier life.

Lyme is an age old disease which has been newly discovered.  In many parts of the country, doctors are still just getting their feet wet in dealing with Lyme patients.  Unlike many ailments, there is no one treatment that works for all.  Many people are having relapses or continuing symptoms, leaving the doctors guessing what is the cause.  Help us speed up the learning process of the medical community by making people aware of Lyme and where they can get resources.  If you are a Lyme patient, please email us with where and when you may have gotten infected to help document the spread of LYME disease.  

We will be building a list of Mohawk Valley NY area doctors who treat Lyme and what the patient's experience with them was.  If you have seen a doctor for a Lyme infection, information on your experience with this doctor would be appreciated.  This information will be available at the Lyme meetings for those interested.  (Sorry, we can not disclose this information over the web.  

Purpose:

The Mohawk Valley LYME Support Group welcomes all who have a concern about LYME and Tick Borne Diseases ( TBD.)  LYME and the co-infections of TBD are becoming a larger concern and more serious health problem of the Mohawk Valley, Tug Hill and the Adirondacks.  The Mohawk Valley LYME Support Group was formed in an effort to bring timely information to patients and families in these areas.

SUPPORT  -  EDUCATION  -  RESOURCES

Disclaimer:  Information on this site is offered to help further awareness of Lyme and associated diseases.  We hope that the information will help you to become more familiar with the subject of tick borne illnesses, but the information on this web site should not be used as a substitute for medical advice, diagnosis, or treatment.  The information on this web site does not represent endorsement or an official position of Mohawk Valley Lyme Support Group or members.  Please consult a physician for all medical advice, including advice on testing, treatment and care of a patient who has or may have Lyme or any associated tick borne diseases.

Get your own clothes treated:

INSECTSHIELD.COM

LD, Hard Road

Lyme Disease: A Hard Road to Diagnosis and Recovery   (Epoch Times)

"The ELISA test is the first screening, and it misses two thirds of the people that have Lyme."    A must read and an informative interview with Dr. Ann Corson, SE PA.  Dr. Corson has treated some in our group for LYME.