Lyme Update #15 *In Sickness and In Health*

Money can create stress in the strongest marriages. With Chronic Lyme the topic of money was an issue in our house. How does $39,000 for 7-9 months of treatment impact retirement plans? I considered not spending the money. That was a heated issue, I saw our retirement go down the drain, it wasn’t a good feeling.

The timeframe to wellness is 2-3 years. Based on mathematics, the cost will double or more. The financial side of Lyme is worth talking about. The cost of getting well hits the bank account hard. We pay $5,000-$6,000 a month which doesn’t include prescriptions………..

We fly to DC every four weeks to see doctor. The trips are often for an increase in IV antibiotics. If you have a bad reaction, it’s better to have a doctor in the next room.

Our insurance did not approve Lyme treatment which leaves us footing the bill. Insurance doesn’t pay for supplements but does cover all prescriptions including Heparin. My doctor currently is using antibiotics to address co-infections caused by Lyme. Another important key to health, is reducing inflammation in the body. There’s a war raging inside.

Every Sunday my husband changes the bandage protecting the catheter. It takes an hour to change.

He had to change his work schedule to administer IV Therapy. He gives my IV treatments, keep supplies inventoried, cooking, laundry, grocery shopping . Most everything is difficult to eat on bad ulcer days. After being on antibiotics for months, it takes a toll on your existing system. My esophagus doesn’t close and creates an ulcer. Those are the days I eat mashed potatoes.

I have antibiotic treatments, three days a week in AM and PM. The other days is Lactose treatment once a day.

Here’s an example of the friction when we don’t agree on my health.

My husband of 14 years said “you need to work out to improve strength.” The comment gave me whiplash! My antenna went up, we don’t fight or scream, just raise our voices and go to separate offices. I’m years away from good health, you want me to exercise? I laughed so hard, then foul language rolled off my tongue. The next words, are you crazy!!!!!!!

I have severe balance problems, walking forward and falling, walking straight then from side to side, if close to ground, I’m going down. I’ve had several bad falls lately. My husband turned in time to witness me slam into furniture last week. He thinks I need to use a cane in-house, I imagine being impaled while falling downstairs.

The cost is high but so is dying.

Xx  M


  1. Ah M, my thoughts and strength go out to you. Until I moved into the RV park, where chronic health issue maintenance is a regular conversation topic, I did not know how costly it can be even with insurance. The toll is high both financially and emotionally on relationships. It is good though, that you and your husband talk of it in the open, even if there is some foul language. Humor makes everything lighter 🙂
    Hugs m’dear.


    1. I agree on the humor, he’s not laughing anymore. That is my nature, find something funny to divert whatever. I feel deeply for those how can’t afford. We’ve spent 10K in airfare alone, he brought a RX home yesterday after insurance it was $110.00. I take supplements costing over 200.00. The emotional toll is hard, relationship and depression.
      I’m strong headed and resisting closing Survivors Blog Here. I’ve been told to focus on my health. I love blogging, doing a good job on a team blog requires much more.
      This week I started living on pain pills, that really makes you write humor without trying.
      I pray having the little boy with you will provide a solid foundation. You’re making a big sacrifice, one I understand. I would not be alive without them. He’ll look back and time and realize the sacrifice you made. My gramps was a year from retirement when I moved in. I never dreamed the impact their love would have.
      Take care.

      Liked by 1 person

  2. Ohmygod M! The battle you endure is eye opening. It doesn’t feel like there is very much of practical use I could say. What I can say is you are in my thoughts often and I hope your load, as well as your husband’s is lessened in times to come. With much love xx ❤


  3. You wrote: Our insurance did not approve Lyme treatment which leaves us footing the bill.

    My reply: I don’t understand this at all. Lyme disease as an ICD-9 billing code. What possible rational did the insurance carrier give you? Is there an appeal process?


    1. It’s a political hot bed.Lyme is costly so naturally there two sides of thought.
      The CDC is working on very old numbers for cases per year.. There is a small group of doctors who says Chronis Lyme doesn’t exsiste, they line each pockets somehow. This group of 8-10 doctors pass their thoughts to the CSC. Whatever the CDC position takes is the beginning of struggle down in rejects. The CDC in turn sets what paramirampters. The aggressive antibiotic theory is exspenive and insurance gladly take the position, not such thing a chronic and they use the rejection of it’s experamal. It’s a fucked up situation. How many people will go without meds and possibly die because they can’t pay thedo not have the means to pay the price. It’s similar to AIDS/HIV. I’m lucky, my doctor was a group of doctors who discovered made the first discovery of AID/HIV.
      More BS politics like all of other BS.

      Liked by 1 person

      1. Just like with DID. We say the illness doesn’t exist so if you persist in having it we mercilessly drain your bank accounts as opposed to letting you keep some of your assets by giving you a large co-pay.

        I’m sorry that you are being treated like this.


  4. Hi M,Thanks for sharing wow I honestly had no clue it’s this bad …as for finances I can only imagine my mom’s latest health issues have been around the same issues and us in her retiring money then us siblings begin to fight who will cover a physio,carer,wound nurse etc the list goes on….
    As I’m miles from you I hope you can keep this close to your heart and know I’m praying for your strength and wellness and sending hugs and love !
    Xoxo lis


    1. Hi friend
      So many people don’t think about the cost of getting well. I feel strongly about those who don’t have the money.
      The more I sleep the less I fall. Next is another nap.
      Thank you for the kind words. I will feel good if one person read the post. Lyme is a lonely place.
      Have an awesome weekend.

      Liked by 1 person

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