Thinking About Quitting Treatment – No One To Talk To

I am a 45-year-old married mother of 2 girls. I am currently going into my 2nd year of oral antibiotic treatment (doxy, zith & plaquenil) for Lyme, Bartonella & Babesia. I have already completed 6 months of Mepron for Babesia.

My problem is that I am still not feeling well. I actually think I was better prior to starting the antibiotics-more energy and less pain.

I do have a great LLMD who reminds me at every visit that it is a marathon, not a sprint. My doctor is wonderful! He is very compassionate and sympathetic since he also battled Lyme. But he also says, you cannot do it alone-you have to have the support of the people around you.

I feel like I have lost my life in the process of being treated for Lyme. I have no social life. My “friends” seldom invite me anywhere because I usually have to cancel at the last minute because I am too tired or are in too much pain.

I used to volunteer all the time at my children’s school, but haven’t been able to do much in the past year. I feel so isolated and depressed.

The only reason I get out of bed some mornings is for my girls. I thank God for them everyday. But at same time, I feel like a failure of a mother. I feel like I am missing out on so much of their lives; time that I will never get back.

I have had absolutely no emotional support from my husband. I will say that he has done a lot to help with our children and with chores around the house. He also goes to my doctor’s appointments with me. To the outside world, he looks like a kind and supportive husband. I do understand that my being sick has put a lot of added pressure on him and I appreciate all the help he has given me.

He reminds me quite often of all the things that he does for me. When I ask for help with something, it’s usually met with annoyance. He has grown to be a very angry person. He is resentful of the fact that I am sick-that I am not the wife he expected me to be. We fight all the time. And this constant fighting makes me more stressed, anxious and depressed, which I know hinders my ability to get better.

His anger is also being taken out on our daughters, which is my biggest concern. He has absolutely no patience with anyone in our house. Constantly talking to everyone in an annoyed, disrespectful tone of voice. It is not fair to our daughters; they do not deserve to be treated this way.

My husband doesn’t show me any affection. He never tries to lift my spirits when I am having a bad day. When I feel like I can’t go on another day, he’s never there to cheer me on, to say, “I’m here for you. You can lean on me.”

He never shows me an ounce of compassion or sympathy for what I am going through. One time I said, “I wish you could live in my body for one day to experience the pain and fatigue I deal with everyday.” His response was, “Oh that’s nice-you hope I get sick!”

Another time, when I was herxing really bad, I said, “I literally feel like I am dying.” (I am sure many readers know exactly what I am talking about.) He looked at me and walked out of the room.

Our marriage was far from perfect before I was diagnosed with Lyme. We tried counseling, marriage boot camp, etc. The Lyme has just intensified our problems. The more I need my husband to support me (emotionally and physically), the worse he treats me.

Which is why I feel like I cannot continue my treatment. It is making everyone’s life hell and I honestly can’t push myself anymore. I am hoping someone out there will read this and be able to relate. I have no one to talk to about this. There is more I would like to write about, but trying to keep it as brief as possible.

I have never posted on this or any other forum before. Please help!

Dear, dear Dani,
Welcome to the forum. This is exactly the place you need to be!

We have a lot of members who know precisely what you are going through -- they have either been through it or are going through it at this very moment.

I know it is hard to stick with your treatment, boy do I know! It is a long, hard pull, with little idea of when it will end. But I will strongly encourage you to stick with your treatment. It sounds like you have a very capable and kind LLMD. So many people would love that!

As poorly as you feel and as much pain as you are in, you are making progress. And that is crucial. If you give up where will you be? Sliding down a deep, dark hole. It simply isn't an option if you are to be the best mother for your girls. You need to get healthy and to show them how to fight for a good life.

Your husband? He's in an awful position. My husband is good, kind and caring and yet when things were really bad for me he made things worse, was dreadfully unhelpful and even called my very good LLMD a quack. Why? He was terrified; terrified I wouldn't get better, terrified I was making myself worse, terrified of my awful symptoms and herx reactions.

When I turned a corner and started to show some real improvement, he was encouraged and became much more supportive. I hope you see that kind of change in your husband as well.

In the meantime, are you detoxing? Can you address your depression with some pharmaceutical or natural remedies (I had a lot of luck with Sam-E, a natural supplement). Can you get help with your pain management. That terrible grind of pain wears down the spirit.

Well, that's all I have for now. Have a look at our "New to Lyme?" thread at the top of the forum. It might have some information or resources you would find helpful.

Glad you found us!

While I cannot help you with your marital issues, I can offer some advice on treatment options.

I have been on rifampin, zithro, and minocycline for over a year. I have just stopped rifampin on my decision. I have also been on LDN during this time and genuinely believe it has helped me greatly. My long term goal is to remain on LDN and Minocycline and ProBiotics indefinitely.

If you want to quit abx treatment for whatever reason, I think you should do so, but you should also have a backup plan. Look into LDN, it's cheap, minimal side effects, and has had some great success for several "diseases". My LLMD prescribes LDN to me, but it was at my request. Not many people know about this "miracle drug" and oddly... I discovered not many LLMD's promote its use.

I'm so sorry it's been a slow, lonely road for you. I've been reading a lot and recently a lady posted that it was like overnight she felt normal and energetic again after taking antibiotics for a couple years. You never know when your miracle is around the corner. I hope yours comes soon. This is a great forum with lots of intelligent, helpful members. I'm just learning myself or I would offer you more advise.

As for your marriage, this type of thing is a strain on any marriage, solid or not. I understand what you are going through, except I don't have lyme, my daughter does. I am constantly telling him about things I read and he just rolls his eyes, like I'm obsessed with this. I am! I'm obsessed with finding the right treatment for my daughter so she can live again. I'm constantly separating meds, giving detox bathes, finding ways to keep her calm and keeping the house up without any help. I've worked for the last 15 years 50+ hours a week, while he hasn't worked or drew any disability for the last 7 years. I pity his life and finally realize how much he doesn't care about anyone except himself. I had to quit my job to take care of "our" daughter and he won't get a job so we can afford her treatment even. He sleeps in the bed while we sleep on the couch for the last 8 months. He goes to bed at 11 and gets up at 12 while I got to bed at 4 and get up at 10. I choose to ignore his ways, because right now, there's no way I have the strength to go through a divorce. Sorry for all that, but just know it's hard on all families. You just have to find your strength (your girls) and try to focus on the good things so you can heal. And we never know, maybe our spouses just have a hard time of not being able to fix it.

If you ever want to talk you can email me anytime. I hope you find lots of support and health very soon. :)

IHL ~ Just from your description.... you may want to reconsider that "(at times) very resentful fiance". Marriage won't likely make it any better. Just my 0.02 cents.

Hi Dani and welcome!

Your words really touched my heart and I feel your pain, I'm so very sorry for what you are going through. I was married to my 2nd husband when I became sick with lyme and he turned from a very loving husband to a very angry one. I guess he couldn't handle my illness. I didn't even know I had lyme (was not diagnosed yet) but I knew I was very, very sick. I managed just to be able to work.

I had no children so after my 2nd husband kept attacking me verbally I finally said to myself that I had enough (if I would have had children I would not have divorced him). Anyway, I could honestly say lyme ended our marriage.

I wish I had some magic answers for you. Maybe don't talk about lyme to your husband since he is not supportive and use this forum for support. This really is a fantastic forum with wonderful members.

My second suggestion is maybe look into alternative medicine. I couldn't afford to go to a LLMD so I just kept reading what others were doing (I had belonged to a different lyme forum back then). I ended up buying books about lyme protocols and I got well using alternative medicine. Just a thought.

If you want to talk in private you can e-mail me.

Hang in there okay? I know everything seems dark and dreary right now but it really does get better. Once you start feeling better then your relationship with your husband will get better as well.... the domino effect.

Don't know if I helped at all and I will be thinking of you,
Denise