Now, I want to tell you this is not going to be an easy ride. It is extremely scary and the medical community often doesn't recognize Lyme disease. I am so sorry that you have become a fellow Lymie. Please know that you are not alone! There are hundreds to thousands of people online and all over the country who help each other through this treatment. You need to know that this disease is extremely controversial and expensive. But, again, you are not alone and you will get through this battle.
Here is Information I Wish Someone Told Me When I Was First Diagnosed:
1. Lymedisease.org This site will provide you with a lot of educational resources that are trusted by the Lyme community. The Center for Disease Control (CDC) and Infectious Disease Society of America (IDSA) have not supported the Lyme community well so be careful where you get your information from. As you or your loved ones begin to read and educate yourselves on Lyme you will find some big gaps in treatment protocols.
2. Find a Lyme Literate Doctor (LLMD) through the Lyme Disease Association Doctor Referral Program. The Lyme community is very protective over these doctors because many of them have faced time in court/jail fighting for providing necessary patient care. Most of these doctors do not accept insurance so they can go by what is best for you (the patient) and not by what insurance says is the proper treatment (max of 1 month of oral antibiotics....this is not enough if you were infected over two weeks ago). The doctors you will be linked to may require you to jump through some hoops to make sure you are legitimately looking for a LLMD. You will be grateful for this process down the road when your doctor is being protected from others.
3. If you haven't already, make sure you get a positive lab test from Igenex. A doctor will need to order this for you and your LLMD will have no problem with this. Often they will order it for you so you have the results before seeing them in their office for the first time. The test is very expensive, but it is SO important to get the clinical diagnosis to get any help from your insurance. If finances are a huge struggle for you there is an organization that is hoping to help people nationwide get diagnosed. The patient must show true financial hardship based on household income and insurance status. You can learn more about The Lyme Test Access Program (Lyme-TAP). I believe Lyme-TAP reimburses you after you pay for it (if I remember correctly the test is around $900 out of pocket). It is expensive but EXTREMELY crucial for proper treatment. Labs like LabCorp and Quest offer Lyme disease tests, but those are only reliable if you have been bitten recently (about two weeks). It is important to know the bulls eye rash that is so stereotypical of Lyme disease only occurs in 40%? of cases, I can't remember the exact statistic, but just know it is not a reliable indicator, especially because you could be bitten on your head or genital area where you would never see it. One Lymie reported seeing the statistic only about 15% of cases will see BOTH the tick and the rash (something to consider).
4. In the medical community there is no one way to treat Lyme. So many factors go into treatment including when you got the bite (if you know, many don't), how far back your symptoms went undiagnosed, what else is in your body like co-infections and/or parasites that are compromising your body even more, your personal philosophies, etc. Insurance does not cover the majority of most Lyme treatments so you must choose a doctor whom you can trust and a treatment plan you can agree with. Some Lymies choose to go a natural route using herbs and tinctures for treatment, others use Western medicine of antibiotics and some Lymies choose a combination. There is a program, Bridges to Access, that can help cover medications if you qualify.
5. In order to recover from Lyme you will have to do a lot of detoxing to rid yourself of the toxicity. Look up any or all of these things to become familiar with what is available to you and what your LLMD may recommend for you. If you don't not believe it will work for you, then it won't work for you so I strongly recommend having an open mind when told to do a certain treatment like: Far Infrared Sauna, Hyperbaric Chambers, Rife Machine, Epsom salt bath, Moore mud bath, Foot Detox Bath, Dry Brushing, Lymphatic Massages, various cleanses, Colonics, Coffee Enemas, Valkion, Earthing, etc.
6. You may also need to eliminate foods that make detoxing more difficult. Generally, it is a rule to eat plenty of organic fruits, organic vegetables and organic clean meat. Dairy is a problem for some lymies as well as gluten. No two people are the same so it is best to talk to your LLMD.
7. Lyme treatments can take months to years. Some people are able to work through treatment while others are unable to do so. If you are needing help paying for your medication you should check out NeedyMeds. This site is a great resource of all the medicine assistance programs by state and nation wide that are available.
8. There is differing opinions on whether Lyme disease can be passed sexually and also from mommy to baby in utero. It is my personal opinion that this can happen as I know Lymies who are living with these instances right now, but the medical community hasn't done enough research to make it official. My advice, use protection and do everything you can to not get pregnant. Better safe than sorry.
9. Another thing you should know is Lyme has extremely high suicide rates of people who are diagnosed. I think this is mostly from having unrealistic expectations about the treatment. Don't be a statistic! You can beat this disease! I hope and pray your friends and family rally around you to support you in the marathon of a treatment (not a race). You will always have the support of the Lyme community who you can find on Facebook like Lyme Disease 101, Tired of Lyme, Lyme Teens.
10. I hope this list helps you as you begin your journey. I encourage you to read other postings in my blog and other Lyme blogs, but don't consume yourself in Lyme. Do not let Lyme define you. You are a wonderful person with so much more to you than being sick.
- But You Look So Good
- What is Lyme Disease?
- Getting the Word Out
- Battle Scars
- Infrared Saunas Are Great for Lyme
- My Compilation of Lyme Friendly Products
- Another Lymies "Lyme Kit"
- Heavy on my Heart
- Secret About Sickies
- Double-Edged Sword
- Update and Understanding My Port
- All in One Place - Lyme in the Media (Books, TV, Movies, Documentaries)
If you have anything else to add or information you would like answered please post a comment and I will make changes.