Posted 11/11/2014 3:19 PM (GMT 0)
Success stories really lift my spirit. Just thought I'd share this one!
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Dear everyone... MANY, MANY PEOPLE GET BETTER!! Take it from me. People DO get well and antibiotics DO work. That's not to say that alot of the "other stuff" doesn't help. One of the biggest problems is that people, like me, rarely visit these forums after we are well. Therefore, it appears that everyone is struggling with treatment with no end in sight. As a previous patient, daughter of a patient, wife of a patient, mother of two patients, as well as the coordinator of the Lyme Care Center in NJ (now closed), I can attest to SUCCESS. My mom, unfortunately, went misdiagnosed with RA for nearly 40 years before being redx with LD, so she has some residual problems, although she is MUCH better. No doubt she would be dead by now otherwise. As for me and my two girls... Symptom-free and have been for just about 10 years now. My oldest had a MINOR relapse, about 9 months after finishing 2 years of abx, went back on for 6 months and has been fine ever since. I was on multiple orals for 21 months total. My oldest (10 when dx) was on for 20, off for 9, on for 6, and my youngest (5) was on for 18 months. They are now 25 and 20 and doing great. No symptoms, no residual problems, NOTHING. As for me, I am now 50. No health problems, in fact, my asthma (which I had since I was 3) resolved with LD treatment. I have spoken to thousands of LD patients during my many years with the LCC, and the majority do well, provided they get to the right dr and are compliant with their treatment.
It seems there is some confusion on many boards about the Jarisch-Herxheimer Reaction. The reason people experience this is because it is caused by the die off of bacteria. When the spirochete dies, it sheds its shell, which causes a toxin in the blood. (That's why you feel you are being poisoned, you kinda are, but in a good way). The bacteria can ONLY be killed as an active adult (in the blood stream), which occurs approximately every 28 days (hence the monthly Herx). The longer you are on treatment, the easier these should get. If you start back sliding, talk to your doc. It might be time to switch things up a bit.
Here's a few things that helped me and my girls...
Carb free diet (Atkins). The bacteria LOVES sugar and alcohol. Starve It!
Saunas (in between herxheimers). Bacteria cannot live in body temps over 101. Since most Lyme patient have a body temp of about 96 or 97, it can go on living because it is so difficult for your body to run a fever over 101.
Pulse dose Echinacea. 5 on/4 off worked for us.
Blue green Algae
Co-Q10 (helps cellular rejuvenation)
and don't forget Acidophillus (unless you like yeast, which can cause alot of the same symptoms as lyme) Many people take this at the same time as abx. They must be separated by at least one hour, otherwise, the abx will kill the friendly bacteria too.
Best of Luck to everyone and don't give up. I know its a roller coaster and its frustrating. But, rejoice. If you are on this site, chances are you at least FINALLY know what is wrong with you!!