bump for Alisande; I'm rather interested in what you think of the other treatments Mr. Kristofferson had.

That was so interesting, Sjerin--thanks! I've always liked Kris Kristofferson. He's lucky to have such a supportive, loving wife.

Some people on an active Lyme message board swear by Hyperbaric Oxygen Therapy, but I haven't considered it. It's not available here--and I think it's expensive. I've heard of many far-out sounding treatments, but not Transcranial Magnetic Stimulation. Nor have I heard of Alinia or Invanz. Doxycycline of course--I've been on it for 5 months.

Note that he was tested by IGeneX. So was I, and I was amazed--stunned!--that Medicare paid for it. i take back all the snide remarks about Medicare in the past couple of years. Well, some of the remarks.

I'm surprised Kristofferson was allowed to have such violent Herxes. Herxing (named after a Dr. Herxheimer) is when the patient feels worse after treatment because the spirochetes' die-off is toxic. Usually if they get a Herx reaction the doctor will dial down the dose of the med that caused it, at least temporarily.

Kristofferson is better, but not cured. I hear this all the time. Just as often, people will say they've been undergoing treatment for months--or years--and don't seem to be getting better at all. Pamela Weintraub's book Cure Unknown was well titled. it's discouraging. Many of the drugs prescribed for Lyme and co-infections have difficult side effects. If you know they would cure you, that would be one thing. But to take something that will make you sicker in the hope it will make you better . . . that's something else.

The money issue is a big one. Just yesterday someone posted in the Facebook Lyme group I belong to, saying Lyme-literate physicians are taking advantage of the situation. Her doctor charges $1,500 for the first visit and $550 for subsequent visits. Many others commented with similar numbers. One woman pays less ($200/75), but she sees a chiropractor. She says she's finally getting better after 9 years. Nine years??? Who's to say she didn't get better on her own?

I'm at a crossroads right now. I've declined two anti-malarials my doctor prescribed, and I don't want to take doxycycline forever. I stopped a few weeks ago, and a day later got two tick bites. And then another. Went back on doxy, and stopped again four days ago, only to get bitten again yesterday. "Lyme people" have urged me to try Stephen Buhner's herbal protocols. He's highly regarded, and I have three of his books. He knows a lot about tick illness. Here's an interesting interview with him:

http://appalachiantrials.com/lyme-disease-misconceptions-interview-stephen-harrod-buhner/

Others report excellent results from homeopathy. (Zip your lip, Elmer. LOL) Since I've had good experiences with this in the past, I'm interested. That will involve seeing someone, though, and that means money--money I don't have a lot of.

Kudos to Dana Parish, who interviewed Kris Kristofferson's wife. She has been doing a wonderful job of getting the Lyme word out. Here's her excellent interview with a top Duke oncologist whose Lyme went undiagnosed so long that he ended up needing a heart transplant. I want to read his book.

http://www.huffingtonpost.com/dana-parish/lyme-the-infectious-disea_b_9243460.html

PS: A Lyme group member who lives in southeast Pennsylvania posted this evening that her family had their property sprayed for ticks--and now the ticks have come inside. They see them on the walls and doors! Her daughter, like me, has had four bites this year.

In the past month I've sent three ticks to Northern Arizona University to be tested. (I lost the fourth.) I'll be interested to see what they say, although the results will come too late to be useful from a treatment standpoint, I think.

alisande, do you have any possibility to live somewhere safer (from a tick perspective)? Maybe more urban? From your descriptions, you seem to be unable to avoid repeated tick bites, that's worrisome.

Best wishes.

Bless you Allisande.

I feel for you Allisande, I've had Lyme twice and ,I too, live in southern Ma. I live on an acre of beautiful woods and paths etc. and I never go near them. Same with our Maine house, the ticks are on trees, ground, everywhere. I just stopped taking doxi as I am having a reaction so I'm flying without meds now. It's so disturbing and, to add to the mix, my husband has had over 15 tick bites in the past few years, three times positive. I'm going to buy the book by Buhner that you posted and try some of the herbal recommendations. Thank you for that link.

Thank you, Audrey.

Snidely (sorry, I'm having a problem transitioning to Elmer), even if I were to find an affordable, tick-free location (highly unlikely), I wouldn't do it. I'd be leaving my kids and my friends, and left with . . . what? A chronic health problem, for one thing. Yes, the prospect of never being reinfected is a pleasant thought, but stress is unhealthy, and for this homebody it would be stressful to leave everyone and the old farm where I raised my children and spent my happiest years.

Yaya, it sounds like you and I are in the same boat. Thanks for responding. I spent some time reading Buhner's Lyme book today, and also discovered his website. It's worth checking out. So many authors' websites are stingy with information because they want you to buy the book, but Buhner is extravagantly generous. I'm glad I have the books though; his research is extensive, and he provides a great deal of information about each of the herbs he recommends. I want to know as much as I can before I take something.

Just to remain fair and balanced here is another perspective.

http://scienceblogs.com/insolence/2016/07/08/kris-kristofferson-the-latest-celebrity-quackery-victim/

I'm not going to argue that Kris Kristofferson has Lyme because I don't know if he has Lyme or not. Neither am I going to wade through that long article, mostly because I'm unimpressed with two things I spotted when skimming.

I don't know who "Orac" is, or why he's hiding behind a screen name, but I strongly disagree with his statement that chronic Lyme is a fake disease. The other thing is his contention that Lyme spirochetes can be found in the standard ELISA and Western Blot tests (the ones that are notoriously inaccurate). Those tests look for antibodies, not spirochetes, so the fact that he even brought them into his argument erodes his credibility. I do know that the spirochetes have been found in the brains of ALS and MS patients via postmortem biopsies. (Reference medical reporter Pamela Weintraub's excellent book, Cure Unknown.)

I don't think Dr. David Gorski is" "hiding behind a screen name". He's pretty well known as the blogger, "ORAC", in the scientific community. He has a M.D. from the University of Michigan (1988) & a Ph.D in cellular physiology from Case Western Reserve University (1994). You can read further on him on his Wikipedia site.

Thanks for the info, Kathy. I hadn't heard of him, but then I have enough to worry about without keeping up with the Lyme wars.

I don't want to hijack this discussion by thoughtful people, but I wanted to add a bit to kathy's comment by saying that Gorski is a professor at a medical school who is very outspoken about the dangers and self-serving quackery of trendy alternative health and "medical" treatments/positions that are unproven and untested. Those so engaged, in turn, keep up a steady barrage of return fire, using statements that are usually lacking in any support for what they promote and are restricted to mostly ad hominem attacks. In other words, "We have no support or proof of what we advocate, that you've brought into question, but you're despicable".

His nom de plume is very public and everyone knows his identity - it's never been a secret.

Thanks for all the thoughtful posts--I enjoy reading them but still have a hard time understanding the push-back on remedies, pharmaceutical and otherwise, that are helpful. Elmer, when one is inflicted with a chronic disease, I'm pretty sure one will try whatever is helpful, as long as there are no dire side-effects.

Yes Lyme disease has reached epidemic proportions. If deer are carriers of the ticks, why don't communities take steps to control the deer populations?

Ticks go after deer for a blood meal, just as they go after humans and other animals. Deer are not the only carriers. Some animals, opossums for example, eat attached ticks while grooming. I believe the ticks themselves are infected by mice.