Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
I joined the CFS support group months ago and just this week got a positive Lyme Disease test result. My primary symptom (besides brain fog) is exhaustion. I have no idea when I got Lyme, but have experienced the exhaustion since late 2013 (I crashed). Since then the exhaustion has only gotten worse, forcing me to give up working (I was working toward licensure in mental health and getting my hours).
I feel lucky to have a holistic, functional MD. She gives me IV's twice a week (when I can get in) and they seem to help. Expect with this positive test she will put me back on antibiotics which is why she recently retested me. I had bronchitis a few months ago and she gave me 2 weeks of antibiotics. Wow! My energy levles really improved!
Any suggestions would be helpful. She has had me on a viraety of supplements and probiotics for some time.
Diet: yes, she has me GF (I do soemtimes cheat ;-) Low to no sugar, salt. I do eat meat (organic) and grow many of my own vegetables and fruits.
Sorry to hear you have Lyme - it's a confusing and frustrating road to travel. I was diagnosed several months ago after years of unexplained symptoms. I have done thousands of hours of research and spoken with several LLMDs. In my research, it seems the overwhelming consensus is that unless you caught the Lyme right away in the acute stage (basically, right after you were bitten), antibiotics are useless. Apparently the antibiotics are only worth anything right after you were bitten and the infection is new. That being said, I have been given several different options for therapy which mostly include herbal supplements. My body is such a wreck from the Lyme that I often have to take breaks from the herbals because I will react, but the docs say that is a good sign. I have sort of put together my own protocol based on the info from my doctors. It's like putting the puzzle pieces together. I, too, need to change my diet, but I haven't done that yet. Baby steps... Would you mind sharing how you were diagnosed? I had been tested several times by my regular GP through the regular CDC testing standards and always came up borderline or negative. It wasn't until I was tested through IGenex that I came up positive. I also had additional "side tests" done that helped to confirm the diagnosis. I wish you lots of luck. Hope to hear back. Take good care.
Thank you for your information. Tending to be a researcher myself, I have limited myself at the moment because I am fatigued.
I see an MD who is also a "functional" doctor. She very much leans toward supplements (I too have heard that antibiotics do not work if not used immediately). With that said - I just started on them!
But- my doc is also and has been, giving me nutritional IV's for the past few months. So her plan is to continue with that and add silver (in some form) to the IV's. Her knowledge base tells her that one modality alone does not work - that Lyme will "hide" in the body then come roaring back.
She did a blood test a week or so again but I do not know what type, I assume different from the one she gave me last year - which similar to you - was "inconclusive". Part of me is a bit pissed off about that - I wish we had begun treatment a year ago. As I mentioned, I have not worked or gained hours towards licensure and have scheduled my first exam for that in September. The brain for is a real pain.
So - I just started taking doxycycline (SP??) and will also start on metronidazole in a few weeks.
OF course I do lots of probiotics!
I bought the book "Recipes for Success - a Lyme Disease Cookbook" which has proved helpful. The recipes are pretty doable and that is important to me (I am NOT an Iron Chef). For the first week it is fish and veggies to help clean the body, after that one can add in chicken and lamb. My doc says organic beef is also ok, but I need to stick with this for awhile.
I am lucky to live in an area of CA that is ripe with alternative medicine practitioners, from yoga to Reiki and as well as good organic markets.
Hope some of this helps and thank you again for responding. Have been in the CFS support group for some time, glad to know there are people out "there" listening!
I totally understand your frustration! It sounds like you are taking good care of yourself and you are lucky to live where you live. I'm in the Northeast where Lyme runs rampant. Sadly, I feel as though more people than not have Lyme around here. I would never ever ever tell anyone what to do - obviously no one has the answer to this Lyme puzzle, but just be careful with the antibiotics. I'd hate to see you become resistant and/or add unnecessary stress to your body. Have you tried any of the natural protocols? I've read of great success with a few, very promising. Best of luck to you. Be well.
Anti-biotics: I trust this doctor. she is both an MD and a "Functional" doctor. Her preference is to use natural organic stuff to help one's body fight what it needs to. However, we both want to jumpstart what has been a long process. I am only on them for 6 weeks. And she is adding other stuff to the mix for the very reason you mentioned - resistant (futile remember??).
Been a rough week. Started the A's Monday night and I have been in bed most of this week. OF course - I am also cooking lots more than I am used to because I am trying to eat well.
I am VERY lucky in that between investments and a working husband, we are ok financially. Because I cannot work. I HATE that but seem to have become more adjusted to it. I hope to get back to seeing clients in one form or another, but somehow, I am intuitively clear that I must take care of my body right now.
I DO recommend that cookbook - mainly because it is easy to use ;-) but again - I am lucky to have organic markets and my own produce and herbs to use.
I do NOT miss NE winters! As achy as I feel being cold would just mean I would be under the covers for 5 months.
Thx for staying in touch. It helps.
I had the same experience with Anti's that you did. Doc gave them to me for 2 weeks for something non lyme related and I felt great! So - she put me on a course of them (2 different ones which is what usually happens) for 6 months.
And... no impact on the lyme.
I finally found a doctor in the area with lots of experience with Lyme. That was last September. I am now Lyme free. Yes - my Lyme HAS BEEN CURED. So it is VERY possible!
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There are tons of different theories about how to treat Lyme within the community and it can seem overwhelming, especially with low energy levels and brain fog (I HATED the brain fog!).
My only recommendation is to take care of your gut bacteria. When My Doc cleared my candida (which I got from taking antibiotics) I immediately started feeling my energy return and the brain fog clearing up.
Good luck to you.