Lyme Treatments - What has helped you?
I've been reading posts here for months and finally decided to join. It seems that most of us are here in search of help and many of us are on the verge of giving up after failed treatments. I've been sick for 20 years! I'm too fatigued and dont have the energy to write everything I've been through but in a nutshell my case is probably similar to many of you.
I got flu-like symptoms 20 years ago (fatigue, brain-fog, aches, sore throat, inner ear pain, etc) and instead of going away it just stayed that way. I've probably seen 50 doctors (medical and natural) and spent a small fortune. I was diagnosed (mis-diagnosed) with everything from Chronic fatigue to fibromyalgia to lupus. In recent years I tested positive with very high numbers for EBV Epstein Barr virus and last year my naturopath sent my blood to Igenix and it came back positive for Lyme.
I've done every natural supplement and herbal therapy, also low dose naltrexone, tindamax, IV treatment (i think it was salt water and vitamin c?), detoxes, etc., and nothing has helped me so far. Some of the natural treatments made me worse as my body could not tolerate the amounts of herbals (massive GI stress) and perhaps the die off made me worse, either way I had to stop those treatments.
This has ruined my life. I somehow manage to work although my business has suffered greatly as I just cant keep up with my old self. I coast along frustrated that I cant find help for this but somehow get by okay day to day until the flare-ups happen. These are either EBV flare-ups or possibly herxing (or both) but when that happens its game over. I can't work, the fatigue is extreme, I can't focus, can't read and can barely walk or talk and am too weak to leave the house for the duration of these flare-ups which typically last for weeks. I am in the midst of one now and it has been @ 3 or 4 weeks. It's all I can do just to type this. This is verrrrry frustrating for a former Type A dude.
My last doctor called on someone out of state that specialized in lyme and they suggested long term antibiotics and tindamax. Unfortunately I am allergic to ANY form of penicillin and most of the abx used for lyme seem to be related to penicillin. I was told to try Erythromycin which is sitting on my shelf unopened. I'm not sure what to do next. I have no doctor and am unsure about what the abx effects may be. I am still searching for a decent LLMD in my area.
Anyway, before I pass out here I will try to get to the point of my post, and that is:
WHAT HAS HELPED YOU?
With so many people here in this forum, it would really be helpful to hear what has helped others who have gone through this. What has helped you beat this or what has at least greatly helped your symptoms? Are there treatments I have missed? I hope I'm not violating any rules by asking this. Again, I think we are all here looking to share what we can to help others. I need help and I know many others here do too. Thanks in advance for your help. MM