Dear Chris,
Hello! I don't take any of the "tinctures" because I don't have lyme, just my sister (her name's Chris also!). I suppose I've taken on the roll of being my sister's "health coach" because she's too sick to do this herself. Anyway, yes, she has taken all of the herbal protocols prescribed by Dr. C. Sadly, none worked. I do not want to discourage you, because I've found many messages in the Healing Well forums that indicate people have attained a degree of "wellness" with the various herbal remedies. Maybe it is just simply that my sister was so infected with lyme that nothing but the "big guns" will work. We cannot restart the IV Rocephin because of the cost. By the grace of God, the first 10 month round was covered by her health insurance, but they will not give clearance for a second round. Dr. C. explained that the out of pocket costs for the IV is somewhere around $5,000 a month (give or take). I think this estimate may include the weekly home nursing that is required to check that the PICC line is sterile and not causing a blood infection. My sister had no problems with the IV (and many, many people have been hospitalized due to serious complications from the catheter), except for the life altering committment to infusing 6 days a week for 2+ hours a day. Very tough to do when you're raising children, etc. The day Dr. C removed the PICC from my sister's arm, we held hands and skipped out of her office! I know that sounds juvenile for two adult women, but we were deleriously happy! Tragically, it's been all down hill since that time. She has been on mega amounts of oral antibiotics since then - on-again and off-again as her system would tolerate. Her remaining symptoms, down to 3 from 40!, are the most debilitating. Her legs are so weak she can barely walk, and the general fatigue is so bad that it is a struggle for her to get out of bed most days. One additional symptom that cropped up last fall, was serious knee pain and swelling in that joint. It got so bad that she finally agreed to see an Ortho Dr. - who said it was "not due to lymes". That was our first indication that he had no knowledge of lyme disease - it's not pluralized!!
Anyway, an accupuncturist and a physical therapist who specializes in lymph drainage helped her alot with the knee problem, however, the leg weakness and fatigue are agonizing. I'm really beginning to question our decision in 2004 to pursue lyme and not MS? That fact alone scares me so badly that I find myself panicking over what direction to go in next. Because of finances, and frankly, because she has deteriorated so badly, we are taking a break from Dr. C. Her primary doctor is willing to continue treating her with Biaxcin and Plaquenil - along with many other vitamins and herbal supplements like CoQ10, Mag., B-12., Cordymax for fatigue, etc. Since she just started some of these supplements, I really can't judge whether they've helped - she is also taking LDN, low dose naltrexone which supports the immune system and can dramatically help to increase the CD-57 counts. Low CD-57 numbers, according to Dr. Burrascano, are indicative of "active" lyme.
The only thing I do know in this whole nightmare is that she isn't any better - she's worse than she was when she first started treatment in 2004. I truly don't now where to turn, so I'm very open for any suggestions or advice.
My best wishes for a speedy recovery for you! God bless!