My mom has Lyme please help

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1

I’m new to the group and wanted to introduce myself and hopefully get some insight on dealing with the effects of Lyme.

I am here because my mother suffers from Lyme. She has been sick for the last 20+ years, which has been almost my entire life. Because of this seeing my mom sick has just been a part of life and became very normal to me. At the onset of her illness she began seeing doctor after doctor trying to understand why exactly she was sick, with most giving her answers like “you or fibromyalgia” or “chronic fatigue” and a lot told her she had “depression”. For years and years she researched and continued too see dozens and dozens of doctors. She finally came across a discussion about Lyme and could relate to every symptom. With that she sought out a doctor that would test for Lyme, she took a cdc approved test and tested positive with Lyme (I am not sure which test and I know that Lyme is hard to test for).

So, about 10 years into being sick and seeing honestly probably hundreds of doctors and specialists my mom discovered she had Lyme. At this point her life at been completely turned upside by the Lyme, the way she was treated by the medical society and not having a medical diagnosis for her friends and family to understand what she was going through. At this point as most of you know treating Lyme and the ways you can treat it are hard to figure out, on top of that you are sick.

I know my mom has tried many different approaches to treat her Lyme, although honestly I cannot tell you exactly what they have been. While she was suffering with Lyme I had been living my own life too and because her being sick had become normal to me at such a young age I didn’t think much of it. Along with the pain of Lyme comes the pyschiological pain too. When you are sick and not understood by anyone it creates so much hurt and anger. At this point she is at least 20 years into her Lyme diease and during this time I have started my own family.

In the last couple of years I have noticed that my mom has not been able to find joy in life because she is too sick. She does not enjoy anything, anywhere, or really anyone. She had been destroyed by this diease and it is destroying our relationship and really all of her relationships.

I am here because I am at a loss, I don’t know how to help my mom. I don’t know how to understand what she is going through. I can’t seem to do or say anything right, she can’t be excited or happy for anything I have going on because she is so sick and to her in her health state it is trivial. I understand this and I understand I can do better.

I guess I am here just trying to understand the diease and how someone with a loved one with Lyme can help. Right I just feel that my mom does not enjoy anything, anywhere or anyone and that includes me. It breaks my heart what this diease can do, it is stealing away my moms happiness as well as our families.

I know this was a long introduction and I truly appreciate any of you that read this. I just really could use some help on how to deal with this diease.

2

So sorry to hear all of this. I have no idea what finances are for either you or your mom, or where you are located, but I have read accounts of people who have been sick for years and years and have gotten their lives back with the right doctor and treatment. As the parent of someone with lyme, I have found it useful to do lots and lots of research on all the different ways and things people are doing to put lyme into remission. There are many treatment plans and each of them has supporters and detractors. Many are rather costly, but making some lifestyle changes and taking supplements can make a difference. If you find a knowledgeable doctor that too can make a lot of difference. If you live in an area with a high incidence of lyme, you should be able to find a doctor that can at least discuss the issues with you and perhaps give you some guidance. In short, I think as a family member, the best you can do is research, try to find a good doctor (I know there are those who only support lyme doctors but financially that may not be possible and we actually had a very knowledgeable general practitioner to whom we will forever be grateful, so don’t close any doors.), and be as supportive as you can. Perhaps you could also find a support group or a therapist for either your mom or you. I can imagine if I had 20 years of my life somewhat stolen from me, I might find it hard to let go of my bitterness in order to enjoy life. Best of luck!

3

Thank you so much for the input and advice it really means a lot. Unfortunately we live in the Northwest where there aren’t many doctors willing to treat Lyme and my mom has gone to a few that do but seems to never be able to stick through the treatment because she is so sick and then gets discouraged. It’s hard as her daughter because you want to make her keep trying but right now as you said she just has a bitterness that I can totally understand. I am sorry to hear that your child has Lyme and hope that they get well, it is hard living with and loving someone suffering from such a controversial and debilitating diease. In the mean time I will take your advice and research and learn as much as I can. And hope that we can find the right road to recovery. Thank you again for taking the time to read my story and giving me some advice.

4

There are several books out there by people who have put their lyme into remission. Stephen Bruhner (not sure if that is the right spelling) is the one a friend recommended to me. I believe the title is Healing Lyme. I’m sure a google search for “books lyme” will give you a wide choice. Best of luck.