I've always been a "do-itself" person. This is the first support group I've ever joined.
Since I've only recently been diagnosed with Lyme disease, I haven't done that much research. The little I have done has only added to my anxiety. Those nasty little spirochetes have really done a number on me. Overall muscle weakness and a total lack of energy make the simplest everyday tasks challenging and frustrating!
I have complete confidence in my MD/homeopath and his integrative holistic approach for treatment and was actually happy when he told me that I have Lyme. My rapidly deteriorating condition had a name and a treatment!
I've started taking doxycycline - the recommended antibiotic by the CDC - and two homeopathic solutions specifically for Lyme (Cumanda and Samento). From what I've heard from friends who have known people with Lyme, this is going to be a very long road to some kind of recovery... Hence my need for this support group.
It's a hard journey. I'm in the middle of a really rough stage right now. The anxiety and depression has pretty much taken every bit of "fight" and "forgiveness" out of me. The people on this board are very supportive, I hope you feel comfortable here.
We are so glad you found this group...there are many loving and supportive people here. I am sorry you are just getting started on your Lyme journey. I will be totally honest with you...it is definitely a long ride with ups and downs. My best advice is to take it one day at a time.. There are good days and bad days and it is very hard to predict when the good ones will outnumber the bad. We are all here for you and willing to help with support and kindness! Welcome to the group, I look forward to getting to know you better!
This certainly is an awful lot to swallow, if you'll pardon the pun...
I take many supplements specific to my needs per my doctor/homeopath and his magic machine he uses to assess general and specific functions. As for meds, I've only just begun doxycycline - I cannot tolerate any of the mycins.
I don't really have any pain per se. Occasional muscle soreness for no apparent reason, not enough to even pop an aspirin though.
What sent me to a doctor initially was that I fell down twice - something just gave way and I didn't seem to have the strength to stop myself and had a hard time getting up. That was a year ago. All the doctor did was order a bunch of blood tests - everything tested was within the normal range. Meanwhile I was slowly getting weaker. After my fifth fall, he ordered back xrays - tumor? - nope, that wasn't it. He recommended I see a neurologist.
The neurologist performed an EMG which indicated that it was NOT a neuromuscular problem. Another blood test to rule out Stiff Person Syndrome ( a one-in-a-million likelihood). He suggested a muscle biopsy which would or would not be conclusive. When I learned that the biopsy had to be done in the hospital under general anesthesia (costing thousands of dollars !) for a possible inconclusive result, I said goodbye to that bozo.
Needless to say, my faith and trust of the medical community was severly shaken. Neither doctor had offered any real help or even compassion.
Meanwhile I was getting weaker still, needed a cane to get around and was finding I couldn't do many everyday tasks. Everything was a struggle and exhausting.
At the suggestion of my ex-husband, I searched for a homeopath. ( I had tried acupuncture which was nice and relaxing for about an hour or two.) It took only 3 visits for him to diagnose Lyme. He's an MD as well as a homeopath with what I believe to be brilliant instincts and loaded with compassion.
I guess what I'm saying is that the reason I joined this group is not so much for the medical advice but to find ways to cope with this insidious disease and what to expect down this long road I find myself on. And I hope to hear positive outcomes! I'm too young to feel this old...
I am sorry you have had a hard time lately. Indeed, treatment takes a long time and many of us have fought with conventional doctors over and over. I came to the conclusion that doctors do not like hard to treat diseases like lyme because very few of them understand it in the first place. I spent years going from doc to doc just trying to find someone who would listen and to test me again - I? was diagnosed in 2009, took three weeks of antibiotics and never got better. Had to quit school and my job because I cannot function. So whatever you are going through we all understand here. Thank you so much for sharing part of your story! I really enjoyed getting to know you better. I hope you are having an ok day!
we are in the same boat in alot of areas...got tick bite a yr. ago and have been dealing with moderate symptoms simce then... take 50 mg of doxy every morning...eat as healthy as l can (organic if possible) to keep my immune system in top notch shape...BUT .. do suffer from fatigue and muscle/joint pain... have several ok days then... BOOM... am in bed all day>totally whiped out...never know when the "spiros" are going to atack...( am in touch with this and other groups and it helps... l was told this is a life long thing to some degree... everybody is different but not many get "cured 100%... hope you are 1 of them...l do believe in prayer and do alot and have others praying for me...) so keep in touch...if you want my e-mail address... l can get it to you privately...thanks for sharing... keep in touch...) Richard
Thank you for sharing about yourself and how you keep as healthy as possible. What do you do to boost your immune system? Are there certain foods that do so or do you take a medication? I hope that you have more good days than bad- I know what you mean about them being unpredictable. If I have one good day I pay for it with several bad ones. I guess the key is to really appreciate the good things when they happen. I was told by my Lyme doc that some people do have to battle this disease for life. Hopefully we are not in that boat.