GoFundMe: Locked With Lyme Q&A

GoFundMe: Locked With Lyme Q&A

1. Tell me about the treatment you are undergoing: Who, what, where: when?
I will be traveling to Coeur d’Alene, ID to see Dr. Tony Smith for his LymeStop Program. I have three appointments spread over the course of almost one week (December 15-20).

Dr. Smith is an experienced healer, who specializes in chiropractics. He developed a unique way of treating Lyme using magnetic therapy. The magnets are used to trigger the body’s immune system to heal itself.

Many of the patients who see Dr. Smith feel better within a year’s time. The people who go to him are a lot like myself, dealing with complicated, chronic conditions and not responding well with antibiotics or other therapies.

2. Will you travel alone?
No, I’m not going to LymeStop alone. Both Jonathan and Gunther will be coming with me. #Roadtrip! We will be staying with relatives who lives in Spokane.

I need my family’s support and company during this big visit. Also, they will themselves receive testing for the Lyme bacteria at our first LymeStop appointment. The visit is not all about me/my health, but our family as a whole.

3. What is the donated money going toward?
Here is a breakdown of what your donated money is going toward when you join in me in my fight against chronic Lyme. Please note, this is for one full year (Dec. 2016 – Dec. 2017).

Treatment (LymeStop, detox treatments): $8,830
Care-taking support (housecleaner and childcare): $4,090
Medicine/Supplements: $1,800
Total: $14,720

Obviously, this is a little short of $15,000, but I rounded up because:
1) I’m probably forgetting some things and
2) GoFundMe takes a percentage of the money donated, so even if I hit my $15,000 goal I will not be getting all of that.

4. Why is treatment so expensive? Do you really have to pay out-of-pocket?
This is a great question, and probably the first that comes to people’s minds. Lyme disease is a complicated illness; treatment for it is not a “one size fits all” due to co-infections and other possible issues such as genetics, dietary health, etc. Only a specialist can be expected to know enough to effectively treat the root cause of Lyme’s complex symptoms.

There is a lot of confusion and controversy around Lyme disease. To explain: “Camp A” believes Lyme disease is hard to catch, and easy to treat. (This is the camp that conventional doctors follow, and insurance companies work with.) “Camp B” says Lyme is easy to catch, and hard to treat.

If Lyme was hard to catch and easy to treat, I wonder how we’re then dealing with an overwhelming epidemic in the United States and beyond? The CDC reports 300,000 new cases of Lyme disease each year, making it the most commonly reported vector-borne illness in the U.S. However, the total number of diagnosed cases is roughly 10 times higher than the yearly reported number. “This new preliminary estimate confirms that Lyme disease is a tremendous public health problem in the United States.”1

Despite the “tremendous problem” of Lyme, insurance companies don’t pay for care provided by LLMD’s (Lyme Literate Physicians). In fact, many of these physicians have unrighteously lost their licenses, for using integrated medicine to treat Lyme. From my experience and in my understanding, the reason of this comes down to money. Lyme disease – because it is an out-of-control epidemic which millions of people suffer from – is not a profitable illness.

My personal health journey has opened my eyes to the greed and fraud that lies within our healthcare system.2 I sought help from conventional doctors for over ten years. None of them helped me. It wasn’t until seeing a Lyme specialist that I learned I had Lyme disease, and thus began my healing journey. I wrote a letter to my insurance company at the time asking for coverage to see this specialist; they denied the request.

Long answer, I know, but it’s a big question.

5. How much have you paid for so far?
Our total cost of money spent out-of-pocket so far has been over $10,000, within a two year timeframe. Note, this was while treating conservatively. (On average, Lyme patients spend $53,000 out-of-pocket per year.)3

My family and I have had to make some major sacrifices in order to pay for my health costs. We have sold some of our most valuable possessions. We have had to say no to life’s luxuries and privileges. We have been on food stamps. When it comes time to pay the bills, our checking account comes so close to zero that we have had conversations about what it would be like to be homeless.

We’re asking for help from others now, at at time we feel we need it most.

6. What will happen if you don’t raise your goal?
I can’t fully say what will happen if we don’t raise our goal. I suppose, we will continue to be a low-income family, fighting with every ounce of our beings, in order to make it.

As I’m writing this (November, 2016), I am about 25% to my goal of $15,000, which covers one year of treatment. This means that we have currently raised enough support to last through March, 2017.

GoFundMe operates in a way that allows me to receive all the donations as they’re given (unlike Kickstarter, for example). I’m so thankful for every donation that comes in.

7. What will the treatment look like long-term?
My ultimate hope is that this new treatment protocol (LymeStop) puts me in a place of remission from my Lyme. That is to say, the illness will be under control and I will be symptom free.

However, this “year of treatment” that I’m raising money for may not be enough. I know that may be hard for you to hear, especially if you are helping me out with a generous donation for my treatment. It’s hard for me, too. But there are simply no guarantees when dealing with something so complex as chronic Lyme disease.

The following excerpt is from LymeStop’s website:

There is no Lyme therapy that is effective for everyone. However, we can safely say that the great majority of people have responded well to LymeStop therapy.

Some symptoms never completely resolve when they are caused by:

  • An unrelated disease
  • A serious heavy metal or chemical toxicity
  • An uncommon Lyme co-infection that does not have a BLP
  • Any genetic methylation issues that have not been properly addressed

In some severe severe cases, Lyme disease will cause permanent damage with symptoms that are irreversible.

When I was first diagnosed with Lyme, I was a patient under one of our nation’s leading Lyme disease specialists, who has treated over 1,000 people with Lyme. A few months into seeing him, he deemed me as “complicated.”

I have hopes that LymeStop is the right next move for me. To the best of my knowledge, I am not dealing with an unrelated disease, heavy metal or chemical toxicity, an uncommon Lyme co-infection, or unaddressed genetic methylation issues.

8. Why do you need care-taking support?
In order to aid the healing process, I need to be extra attentive to my self care. This means limiting stress, frequently resting, practicing detox regimens (skin brushing, showers/baths) and staying on top of my supplements as well as healthy foods/beverages. So far in my journey, I’ve not been able to do any of these things consistently. Self care is A LOT of work, especially when you’re at home caring for a busy toddler (all the moms reading this are probably nodding their heads)!

Care-taking support (specifically, a regular housecleaner and an as-needed babysitter) will allow me the time and space to be able to heal as I need to, without having to worry about the chores or little stresses that get in the way of my well-being. Most days I wake up barely able to move. I am active throughout the days, not because I feel able to be, but because I have to be. As a busy mother, I simply cannot choose to rest. By hiring professional help, I will have guaranteed moments of rest, allowing my body a better chance at restoring itself.

9. You should try… [this doctor, that clinic, this treatment protocol].
There are so many ways to treat Lyme disease, and everyone seems to have their own opinions. Please don’t expect me to try your recommended treatment, as if it’s the only way to true healing.

I have spent many hours researching the basics, as well as advanced topics, of Lyme disease. My research has included, but not been limited to, different treatment protocols. I have tried many, and have considered many as well.

What I know: Antibiotics don’t work for everyone. My body responds better to herbal treatments. I am my best health advocate.

10. Why do a GoFundMe Fundraiser? Your health, your problem right?
No, my health is not just my problem. My illness happens to be a rapidly growing epidemic that is causing serious damage around the globe.

Since becoming parents to Gunther (now 1 ½), I have seen the value of community like never before. I believe it’s important to be vulnerable with one another, to share in each other’s successes and sorrows. By sharing our reality with others, we hope to bring awareness to this epidemic disease, as well as to allow others the chance to fight it along with us. The longer I remain sick, the more I see how much I truly need the help of others.

Was this Q&A helpful? Do you have any questions I didn’t answer? Comment below to let me know!

Thank you for your love and support!

 

SOURCES:

  1. http://underourskin.com/resources
    http://www.lymestats.org/assets/002_ignored.pdf
    http://www.lymestats.org/assets/17_antitrust.pdf
  2. http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html
    http://www.cdc.gov/lyme/stats/humancases.html
  3. http://www.lymestats.org/assets/003_oop.pdf
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