This is my first post on this forum. It seems there are many more people out there on Zhang's protocol than are actually posting, but since exhaustion is such a prominent symptom, that could be the reason. As a community, we especially need people who have been on the protocol for several months to share their progress. Encouragement and inspiration are desperately needed!!
I am a mom of 2, and writing on behalf of my 13 year old daughter who has Lyme Disease. She has been suffering for one year. Although I myself do not have the disease, I feel as if I have gone through it every step of the way with my daughter. She has had almost every symptom under the sun. She initially fell ill (severely) with a flu like illness in January 2012. She had a high fever, muscle and body pain, exhaustion and sweats. I did not know what was wrong with my daughter and the pediatrician told me she had the flu. She did not get better. After a short course of antibiotics and a visit to an Infectious Disease Specialist, who told us she had fibromyalgia or chronic fatigue syndrome, we were desperate. Finally, bloodwork did reveal Lyme Disease. Another course of abx (only 3 weeks) gave my daughter no relief and the pediatrian Refused any further treatment, telling us the CDC has a standard of care protocol for Lyme Disease patients and he had carried that out for us, and further suggesting preteens are known to exaggerate and that she looked fine to him. She was not fine, and when I objected, he instructed us not to come back till spring. Really??
I found my way to a Lyme Literate Doctor, a well-known specialist. We felt redeemed and that we were in the right hands, and he put my daughter on Doxycycline. Her symptoms were so difficult to deal with and I cannot tell you how hard it was to watch her feeling so ill, missing months of school and missing out on life... She experienced debilitating fatigue, muscle and joint pain (severe), sweats, dizziness, ear ringing, stomach pain, tingling and sharp shooting pains, fuzzy thinking, difficulty concentrating, depression, anxiety, the list goes on.
After 6 months on doxycline which my daughter tolerated fairly well, she had improved greatly. By September of this year (2012) she was almost symptom-free. Just in time for school, she was able to resume her life and begin 7th grade (a difficult year at best for most of us). The Lyme doctor took her off doxy in October 2012 since she was symptom-free. We were so happy...going out to celebrate her CURE.
Not so fast....After about 7 days, some little symptoms started to creep back. First a little tired, then a little achey...then some tingling here and there. By thanksgiving, I watched, alarmed, as my usually full of life pre-teen sat with her head on the table at Thanksgiving dinner, utterly exhausted. I knew then, Lyme was back, and we had a problem again.
The Lyme doctor put my daughter on Zithromax. She felt sick to her stomach from it. And I felt sick that she was back on ABx with little improvement after about 2 weeks. It was at that point I prayed to God for an answer that was more gentle and could cure her. I did not even know that a cure was possible until I found Dr. Zhang.
So, my daughter has been on the herbal protocol since December 5, 2012, when we met Dr. Zhang in NYC. Everything he said made perfect sense to me and was an answer to my prayers. Zhang says his treatments are Curative not simply symptom supressing. I can tell you from our experience, the ABx just supress the spirochete, that's it. You are a slave to the ABx which mess up your body. I just couldn't stand by and watch my daughter debilitate that way.
After 5 days on the Zhang's herbals, my daughter experienced a VERY powerful Herx that put her in bed for 10 days. She has lots of pain and exhaustion and memory loss. It made me nervous to watch the Herx go on and on, so I called Zhang several times. He reassured me the more powerful the Herx, the better the response to the treatment.
She has now been on the protocol for one month. No Zithromax for the past 3 weeks. She is a bit better and has less pain, especially the back pain has improved. Cordyceps was added because of the fatigue, which is still a problem. Overall, she is feeling better, but definately has a way to go. I am hopeful that my daughter will be fully restored to good health in 6 months, as Zhang has predicted. Zhang has said the key is to be patient and that the herbs take time. It is wonderful to see her improving while not taking any antibiotics whatsoever. That to me is such an amazing blessing and has given us renewed resolve to keep going. Sure, we could have stayed on the antibiotics merry-go-round. Next step for us may have been IV pic line and that frightened me.
My daughter takes her regimen well and tolerates the herbals well. The Allicin is a bit challenging because of the smell and we deal with that with lots of gum and body spray.
Her symptoms continue, but she is not herxing at the moment and I wonder if she will again next month or at some point? The no carb, no sugar diet is a challenge but we try our best. She also gets acupuncture.
Wishing all of you out there well on your journey through this maze called Lyme Disease. This experience has forever changed our family and I am a huge advocate of Modern Chinese Medicine and the Zhang protocol. Dr. Zhang is blazing a trail here in the US where all we know is one-size fits all medicine.
We will check in regularly to report our progress.
It would be great to hear more from others and their progress.
Kim and Emily (age 13)