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First Steps (After You Get Diagnosed with Lyme Disease)

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Reprinted from with the kind permission of Paula. To read the original blog, click here. 
First Steps (After You Get Diagnosed with Lyme Disease!)
It is so hard when someone is suffering from a serious illness.  I know that first hand, as my husband has had many life-threatening health problems over the past 9 years.  But he gets the help he needs from our medical system, so even though his illnesses have been very scary, we have felt confident in the doctors and their ability to treat him.
Not so with Lyme in Canada.  We are left floundering, searching for our own health care while in the midst of a debilitating illness. 
Here is how to take matters into your own hands:
1. Gather a few people around you who can help you to navigate through all of this, and who can be your advocate – your spouse, close family, a friend or two.
2. Do your research.  Read up on Lyme disease.  Look at Lyme symptoms checklists online and see if you think you fit into that.  There is a wealth of information out there, and you need to be informed.  (Check out my Links tab.)
3. Have blood work done by the IGeneX lab. (See my IGeneX tab.)
4. Find a Lyme-literate MD and get on the waiting list.  (See the Find a Lyme-Literate Doctor tab.)  You might be waiting 3-6 months for an appointment.
5. Record your medical history in a clear, concise manner, and keep it up-to-date.  This information will be very important for your LLMD to make a clinical diagnosis.  E.g. What are your symptoms?  When did the symptoms begin?  Have they changed?  Where might you have come into contact with ticks?  What doctors have you seen?  What tests have you had done? 
6. Continue to seek help from your physician locally if you are having health problems.  You may need symptomatic relief.  (Be “informed” if you are prescribed steroidal anti-inflammatory medications.  These are contraindicated for Lyme and can make your condition worse.  Do your own research before making a decision to take these medications.  You can find information on this on the web.)  Be patient with your physician.  You may wish to discuss Lyme, but in all likelihood, he/she will not have been sufficiently trained in this area and will not be able to put the pieces together.
7. Seek a good counselor, especially if you are having symptoms of anxiety or depression.  You need the support while you are battling this.
8. Eat well.  Clean up your eating habits:  NO sugar, no white bread, no white pasta, no white rice, no potatoes.  Basically, get the bad starches out of your diet because they “feed” Lyme.  No alcohol.  No caffeine.  Drink lots of water.
9. Forget about exercise until you have started treatment and are feeling somewhat better.
10. Ask for help!  I could not have gotten through this without the help of family and friends.  People will want to help, and may ask what they can do for you.  Do you need help with meals?  Errands?  Driving the kids to school?
11. Pray!  It’s time to get your spiritual life in order.  (See the Peace and Hope tab.)

Paula is a fortysomething wife to a wonderful husband, a mom to two great boys, and an elementary school teacher. I live in Canada. She has also been battling Lyme disease since January 2011. At this point in time, she appears to be winning the battle, but it was a long road to get here. You can read more about that on her blog under My Lyme Story.

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One thought on “First Steps (After You Get Diagnosed with Lyme Disease)”

  1. bettyg says:

    so glad to see you addressed igenex or OTHER LYME DIAGNOSTIC SPECIALTY LABS to do your blood testings who test ALL PROTEIN BANDS.

    thanks for your detailed article; i totally agree and get into ONLINE SUPPORT GROUPS who are walking in your shoes.

    bettyg, iowa lyme activist
    47 yrs. chronic lyme

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