“Resources for Lymies- Part 1” (Lyme Chat: 10-6-2013)

Every Sunday at 8pm EST/ 5pm PT, I hold the Lyme Chat via Twitter, bringing the Lyme community together.

For the past few weeks, I’ve been trying to research and find answers to some tough questions many have, including myself.  I’ve realized that there are limited resources for those who want not only to learn about Lyme disease and tick-borne illnesses, but all aspects surrounding them- such as what doctors to see, treatments, and most of all, how to afford the care you need. What is also very challenging is that what I know and the information I share here, comes from my own personal experiences. I’ve spoken to many people who have tick-borne illnesses and include their perspectives as well, but want to share more than just personal experience. However, there are so many other factors to consider! Lyme disease is extremely controversial- not only in the U.S. but across the world; I went to school and studied in the health/medical field and still have a hard time understanding our government & healthcare system, never mind having the knowledge of these subjects in other countries.

One thing I’m sure of, is that Lyme disease and other tick-borne illnesses are a silent epidemic and there are many questions left unanswered.


During yesterdays Lyme Chat (and I apologize for the confusion- I was not going to have it, but last minute had some energy for it!),

I asked a couple questions hoping to get some feedback for this Sundays Lyme Chat (10/13/13):

*Q1: What are your favorite websites for info about Lyme disease & other tick-borne illnesses? 

*Q2: What websites or resources would you recommend to those who don’t know much about Lyme disease? 

*Q3: What websites or resources would you recommend to those who have recently been diagnosed with Lyme and tick-borne illness? 

*Q4: Have you participated in local Lyme disease support groups/meetings? Are there any you would recommend?

  • MD Junction (someone told me about this & I’ve found this to be a great source!)
  • Yahoo! Groups; create an account with Yahoo! then you can search for Lyme disease support groups within the site
  • LinkedIn ( If you have a LinkedIn profile you can search for Lyme disease support groups)

*Q5: Other than websites, how and/or where have you learned about Lyme disease, treatment options, LLMDs, etc.? 

  • I, as well as many people I have talked to, say that they have learned the most about Lyme disease through social media and connecting with other individuals who also have Lyme & other tick-borne illnesses.
    • I find Twitter to be the best social media channel because you can search for people using hashtags- unlike Facebook, it’s a lot easier to connect with people and there isn’t a lot of personal information you have to worry about protecting; you either can make your Twitter account private or public and it’s up to you what information you want to share (or not share!)
    • I also find Twitter very easy to access from your phone- another reason why I am not on Facebook often
    • How to: Get the Most Out of Twitter #Hashtags
  • Going to see different doctors- LLMD or through doctors I see that practice alternative medicine

*Q6: For those who do not have health insurance, what resources and options would you suggest for them? 

  • As of January 1st 2014, everyone will have access to health insurance (in the U.S.) under the Affordable Care Act
  • Do you live in a state that offers short-term disability programs?
    • California, Hawaii, New Jersey, New York, or Rhode Island
    • “A few states offer temporary disability assistance to low-income people in other ways. For instance, Maryland’s Temporary Disability Assistance Program offers cash and medical and housing assistance” (Info from, “Ways to Get Short-Term Disability Benefits”
  • Are you eligible for Medicare?
  • Are you eligible for Medicaid?

***Note: The government is still fixing all the issues with Healthcare.gov ***

*Q7: Many people have to fundraise to pay for medical bills- what websites, companies, & other resources would you suggest? 

  • Indiegogo (I personally had a very successful campaign and is a great tool, easy to use and trustworthy!)
  • YouCaring (Similar to Indiegogo- I have not personally had a campaign on this website)
  • Apply for a grant through the Lyme Light Foundation
    •  To be eligible, you must be diagnosed with Lyme disease, between ages of 3-25, can demonstrate a qualified financial need and live in the United States
  • I happen to have health insurance, but most Lyme Literate doctors do not accept insurance (nor will insurance companies be willing to pay you back- even a percentage of what it costs- after you file a claim)
    • I have gotten relief of some symptoms through alternative medicine, again which is not covered by insurance
    • I find that having all your finances organized, can help you pay for the care you need; try using:
      • Mint.com
      • Credit Karma
        • Using Credit Karma, I was able to find out which credit card would be best for me, as well as which one I would most likely be approved for- I was able to transfer the balance from one credit card, to a new one- that way I am not being charged interest for one year and have a chance to pay it off/not accumulate hundreds of dollars in interest! (being the new credit card offered this deal)
  • Talk to all the companies you currently have accounts with/have a monthly bill to pay- sometimes, they are willing to give you a break- it may not be much, they may not be able to offer any sort of break, but it’s definitely worth a shot

Other helpful tips:

– Keep a ‘health journal’

Write down/record some or all of these things each day (or as often as possible) :

*Always include date & time for each*

  • Which medications, herbs, supplements, vitamins, etc. you are taking
    • Try to take it them the same time each day or as instructed by your doctor(s)
    • Include dosages if they vary
  • Vitals: Blood pressure, blood sugar, pulse (is it strong or weak and is it regular or irregular), temperature
    • It can also be helpful if you write down what you are doing when you are recording these- ex. many people have higher blood pressures when they are at the doctors office (“White coat syndrome”)
    • If you are at the doctor, ask them for your vitals- sometimes the nurses or doctors will take them and not tell you; if they don’t, request that they do!
  • Weight
    • Try to use the same scale each time
  •  What symptom(s) are you experiencing?
    • Please note any medications or methods used to try and relieve them
  • Any significant events that occur
    • If you go through a stressful or life-changing event, this will play a role in your mental and physical well-being
  • What you did that day
    • Make a note if you went to the doctor, the dentist, or maybe activities like going to the grocery store, hanging out with friends, or getting a hair cut!
  • Weather
    • I suggest looking up the weather and record it the day after so you can write down what was observed & not predicted!
    • Also record when there is a full moon, maybe half moons, etc; lots of people say when there is a full moon (as well as a couple days before & after it occurs), their symptoms are much worse, especially sleep
  • Ladies: Write down when it is your time of the month!

*Remember to always include the date(s) & time(s) for each of these*

  • This may seem like a lot of work and it is! However, the more organized you are, and more often you do it, it will become easier!
  • This is a great way to help you understand yourself, what’s going on with your body- maybe you will find some sort of pattern(s)!
  • This can also be useful to your current doctors, doctors you may see in the future
  • If you have not been writing down your symptoms each day, please try to at least write down how your energy levels are each day!
  • There is no method that is better than the other, what is important that you find what works best for you-organization is very important!
  • There are some great apps that are free or only cost a couple of dollars that can also help you keep track of these things!
  • Other health related apps I use:
    • Headspace meditation for modern living (free)
    • Lumosity (I’d go with the free version- the other is $15 a month)

– Personally, I always like to write it down and keep a journal- I actually write things down plus use a few of health apps- (I’m a visual learner- plus there are days when you may not be able to go on your computer or look at your phone!)

 – If you are really good at this- keep track of what you eat each day!

  • A great free app that helps you keep track of your diet (and calories) is My Fitness Pal (it’s free!)
    • While many people use this tool for weight loss- I think it’s more important just to know what you’re eating- it can help determine what foods may or may not make you sick!

Dieting

– If you’re anything like me, you’ll hate hearing diet and exercise are so important! We all know that they are! But what foods you eat and don’t eat are really important in recovery!

– I’m not an expert, but this is what I’ve learned about dieting/having a Lyme-friendly diet:

  • Stay away from sugar!
    • This also means limiting natural sugars (fruit, juice, etc.)
  • No fast food, no alcohol, no smoking
    • These things are bad for anyone!
  • Most “Lymies” and individuals do well with a low carbohydrate, high protein diet
    • Lots of veggies, salads, greens, raw nuts, etc.
    • I also like to have all organic, non-GMO foods
    • Choose complex carbohydrates over simple carbohydrates
  • Lots of people stick to a gluten-free diet as well
    • I personally do eat some gluten-free foods, but since I don’t have Celiac disease, I don’t find it necessary for me to stick to a strict, gluten- free diet
  • Too tired to cook? Try making your meals for the week over the weekends! This will avoid you resorting to take-out and other unhealthy foods!

As far as exercise, I take a walk when I can- a lot of people recommend doing stretches every day (or whatever your body can tolerate); but of course, it’s important to exercise- on days that you are feeling okay, try to do some exercise, but don’t over do it

Check out resources for Lymies Part 2! 

**Note: I am not an expert; the information I post comes from my personal experiences as I continue my fight against Lyme, and feedback from others I receive who also are battling Lyme & co-infections; I have received my B.S. in Public Health; I am not paid by any companies/websites so the sources I write about are based on my opinion as well as others!**

Sharing what it is like to live with Lyme disease & other chronic illnesses to spread awareness; health advocate;

5 Comments

  1. This is full of great information! Thanks for your efforts.

    • I’m so happy the information is helpful and my hard work has paid off! I will continue updating both resources for Lymies parts 1 & 2, as I get more feedback- and since these questions we have yet to really know the answers to!

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