Angie,
It's good to see that you are doing many pro-active steps, indicating you are not lazy. A person needs to put in real effort to beat advanced lyme.
Please obtain Stephen Buhner's book, Healing Lyme. I just checked Amazon – it's still available. It contains a wealth of information. Buhner is an herbalist who has really studied his field. The book is technical but quite understandable for the layperson. Buhner lists about 500 references behind the info he offers, but much of it is from his own experience as an herbalist. He addresses controversies even within the realm of the alternative field. For example, an herbal product called Samento is popularly indicated as one of the weapons against lyme by many Lyme-literate docs. Samento is derived from the herb, Cat's Claw, and contains only some the constituents of Cat's Claw. Buhner wrote a detailed account of why one should NOT use Samento, but should use the full Cat's Claw. In fact, CC is one of Buhner's primary herbs against lyme. Buhner even suggests what brands to buy of some of his various recommended herbs and supplements.
Buhner's "core protocol" is: andrographis, resveratrol, cat's claw, and smilax. He provides a range of amounts to take of each. He also has separate additional protocols for various lyme-related purposes. For example, there is the "collagenous tissue protocol" which includes vitamin C and about 8 more items. He goes into detail about what each herb, vitamin, hormone, etc does in the body and why it is recommended.
My first episode with advanced lyme, as stated earlier, had me on crutches for 5 months (and almost ready for a wheelchair). Once finally diagnosed I was immediately put on 10 weeks of IV Rocephin which helped a lot! I was off the crutches, but could still hardly walk and still had other symptoms -- in other words, I still had lyme. When they cut me off of the Rocephin, I went full out with Buhner's recommendations, which certainly seemed to do the job. In three months I could resume working part-time. After about 8 months on the herbs, I weened off having fully recovered (and had NO antibiotics during that period).
You are probably aware that there are several lyme support groups open to all on the internet. There is a Buhner support group in which I used to participate 7-8 years ago, which probably still exists. I want to share one lesson I learned there. Many of the participants complained about the AMOUNT OF PILLS that Buhner recommends. They often complained about not being able to take so many. And they did not get well! Look, if you want to get well, you do what it takes! I took the MAXIMUM of nearly everything that Buhner recommended. That meant for me about 35 pills per meal, over 100 per day (plus a few item in liquid or powder form). It's not so hard – a mouthful of food, then one or two pills with a sip of water, another mouthful of food, another one or two pills, etc.
There is a website called Planet Thrive on which Buhner does Q&A.
http://planetthrive.com/I see there is now a new website that Planet Thrive has devoted exclusively to Buhner at:
http://www.buhnerhealinglyme.com/about/The second time that I wound up with advance lyme I had tried to deal with the infection right from the beginning with Buhner's approach, but I gradually got sicker – probably because, unbeknownst to me, I also was infected with Babesia. Also I might have had a tougher strain of borrelia that time. My Lyme-literate doc (who was big on blood tests which revealed the Babesia and the Lyme) worked with me as we incorporated Buhner's stuff along with his oral antibiotics (mainly Minocycline and Tindemax) for the Lyme; and Artimisinin and Quina for the Babesia. The antibiotic treatment was minimal so that I would not be continually wiped out. I was able to continue my work as an arborist pretty much throughout the 2 years it took before I became symptom-free and my doc said my blood tests indicated I was cured.
One of the big problems with Lyme is that when the spirochetes are confronted with an antibiotic they tend to go into "cyst form" which is kinda like hybernation and renders them safe from the antibiotics. When the coast is clear, they go back to their active form. Tindemax is the "cyst buster." I liked Tindemax as there seemed to be no negative side effects, and it apparently worked. You said you cannot tolerate antibiotics. Not any of them? If not for the the Babesia, I might have been successful the second time with just Buhner's stuff, who knows.
My Lyme doc is an MD so he can prescribe anything legal. He's a nice guy. He might be willing to work with you by phone. Even blood tests can be done long-distance if you have access to something such as "Quest Diagnostics." Results can be emailed to the doc. Let me know by private message if you would like his name and phone.
You mentioned the rife machine. I looked into that 7-8 years ago. I ruled it out as I didn't see how it could work from a scientific standpoint – but I could be wrong. We each have to decide these things for ourselves.
Good luck.