Dr. Schaller has decided to give access to his latest book, The 2009 Babesia Update, free to anyone who needs or wants to read it. Even given the immense sacrifice of time and cost to him personally, his continued and growing awareness of the many people sick with Babesia has prompted him to give out the information to save as many lives as possible. For those of you who read the first book, The Diagnosis and Treatment of Babesia – which has much useful information that should not be ignored and is not included in this book – you will understand why he is so passionate. His son, Jeremy, would not have survived had he not taken up the mallet and strove to find successful ways of treating this illness. Jeremy is alive, healthy and a wonderful young man thanks to his Father’s care and hard work.

Babesia can cause death, disability, obesity, serious fatigue, migraine torture and a hundred other medical problems. The information needs to be free to everyone.

We also hope it will help some interested healers catch stealth Babesia more often, because we feel it is common, and not an occasional finding in a Lyme positive patient. Many new Babesia species are being found in humans even in the last four years, so the list of human Babesia species and their variants is not finalized

Finally, the cost for top laboratories to keep up and have perfect diagnostic testing is an unrealistic expectation, so other new ideas are included to help show low levels of Babesia that have significant body effects, based on solid research articles.

For those of you unfamiliar with the publishing world, please know that unless your name is Dr. Phil, Hillary, Suzanne or Oprah, books on super specific issues do not sell and do not make money or even remotely come close to breaking even.

Any money being made from selling this book is certainly not worth one life. It is not worth one person becoming disabled and non-functional for years or decades.

It’s after midnight, and I’m awake again, despite having gone to bed at a reasonable time (9 PM, this time).

I know, from how I feel, I won’t go back to sleep before at least 3, and I know that tomorrow is one of the days I Must Get Things Done, which makes having energy rather important.

So my anxiety takes off, which I’m sure won’t help me get back to sleep–see how it turns into an incredibly miserably cycle?

I’m getting better, slowly but surely, but the cost of my treatment doesn’t seem to be rising so slowly. I’m blessed to have parents who prioritize my treatment–but I also have a mother who was just diagnosed with chronic Lyme and babesia, herself. (Bartonella is yet uncertain, diagnosis-wise.) My father needs to be tested.

And the costs rise, and while my mother is working more at tutoring, where she can–despite being ill herself–the money that comes in doesn’t match.

I’m trying to find work to do from home, but–of course–everyone is trying to find work to do these days. The house my parents own and have been renting to others, among myself, may be sold, if we don’t get two more roommates rather soon–and sold at a lost. (And if it sounds like a silly expense to have this house in the first place, it wasn’t when you had two other roommates who were paying rent regularly, first of all. Second of all, not all the problems in my life have been from Lyme, and after a rather horrific one that related to past living situations, my parents were determined I’d never go through one again–and this was the best option, ultimately. It helped me in a lot of ways, the past few years, with the reassurance it gave. I’m not dealing horribly well with the idea of losing it, not to mention the lack of energy for moving, and million other things. The least of them is certainly not the loss my parents could take, financially.)

Lyme hits everything. Every so often, I brace myself to go read Lyme support groups and such. And then I flee, quite honestly, because I nearly go into panic attacks reading about mothers and fathers afraid they cannot afford to pay for their children to be cured.

How horrible is that? That parents literally cannot afford to treat their children?

My own insurance has started fighting things; I was on IV Rocephin this summer, which led to part of my “disappearance”. I was supposed to be on it for 3 months. My insurance stopped paying after two, saying that after their doctor consulted with mine, he concluded no more was necessary.

Except he never consulted with my doctor–my doctor wasn’t even in the country when he claims they spoke.

But that doesn’t seem to matter, much, to getting the insurance people to act quickly.

I’m adding ads to the site, now, which I hope you understand. And, thought I don’t know if it will help, I’m pointing you again to the paypal button. Even if I only make enough to cover the site costs–it’s something to help fill in part of the hole, if that makes sense, and this is something I feel like I need to keep doing, as I can.

Of course, she adds wryly, if anyone wants to hire me to work from home on something, be it webdesign or freelance writing or anything, I’m open to suggestions. The new site email is lifewithlyme AT ymail DOT com (and please note the Ymail, not Gmail), and you can reach me there for that, along with anything else.

Next post: some links, and the current treatment I’m on, which is giving me the herx of my life. (And, what I’m doing to treat it.)

I’ve been gone for a bit for a reason; I walked into an appointment with my regular Lyme doctor in March, and was told I immediately needed to start IV Rocephin.

My life was rather turned upside down by this, especially as my parents insisted I return to their home in Tennessee for the duration of the first round, because they feared it would be too hard on me. It was not, actually, that bad; I could tell it was working, and it was somewhat painful, but I’ve had far worse herxheimers. I was not able to take the Flagyl with it that I had been supposed to until the last month of the three-month course, but now I can take it with no problems.

I went off IV treatment for a month, and two weeks ago I’ve started again–with different medication, in part because my insurance company is using dirty (and possibly less-than-honest; suffice it to say we’re fighting them) tactics to try and not pay for my Rocephin care. This has meant a great deal of expenses for my parents, but thankfully they are both saints and more than happy to do whatever it takes to care for me.

Now I’m doing IV Flagyl one week, and IV Zithromax the next; the Zithromax is murder on my stomach, and it’s giving me horrible herxheimers now that I’ve done it a week after doing Flagyl for a week. This is good, as it means it’s working, but it’s very hard to bear; reiki, methadone, and pepcid are what are getting me through it. (I’ll be writing about all three, as well as the antibiotics, in posts about medications, supplements, holistic, and alternative treatments that I’ve experienced. I’ll also be posting about ones I’ve read about but haven’t tried. Remember, as always, when you read these, that if you consider trying anything yourself, a) I am not a doctor, and post these only for information, but also b) you should talk to your doctor about trying anything new; if you don’t, it is by your own judgment.)

It’s been hard, but I’m struggling through it; I’ve also finished a class, finally, and I’m starting a new one tomorrow! I’m going to continue to work on updating this site regularly–especially with some books by a consultant/specialist I’m now seeing, too, who’s absolutely brilliant–and I’m still seeking people willing to work here too; even if you just collect news links, it’s helpful.

I’d like to add an email list, which I need to work on figuring out how to do.

The subject line mentions my parents, and that news is upsetting; one of them has also been diagnosed with lyme and babesia, and the other is being tested. Finances are strained right now, and I feel horrible that I can’t help in any way while causing the greatest drain on them, but I trust that it will all work out, somehow. The one thing that gets me through this is faith, and it’s one thing that I believe everyone needs to have to survive something like this. My faith is in God, along with my family; yours can be in something else, even just the care of your friends, but I do think that we who are ill need something to cling to, to remind us that there is more than the pain and the struggle, the bills and appointments and pills and tests.

I hope you all are well, and still reading; please let me know what you think, what you’d like to see, and where you’re at in your own cases. I care about you and pray for those of you I know.

Like the subject line says, I am now writing to you from a new server with the domain finally being controlled by the people I want in control of it.

This means new material coming, like I promised, and I’m working on it. I hope no more than two days between posts/additions of SOME sort.

As always, I am looking for people to join in with me on the site.

This is the new host set-up, though the domain isn’t pointing here yet. I transferred everything over, but we’re having some problems; the info on the entries won’t show up, but when I go to edit them, well. All the info is still IN them.

So I’m working on that, but soon! Soon all will be in place!

The site may be down briefly, as I’m moving to a new server and host! When it’s up again, I’ll be updating more frequently. (Really. I promise. It helps not having to fight every time to do so.)

Two things at once! It’s amazing!

First, I want to let you know about a movie that’s coming out called Lymelife and starring Alec Baldwin and Timothy Hutton along with many others. It’s set in the 1970′s and deals with a number of topics, but one of them is–as one might guess from the title–Lyme disease. Timothy Hutton is a distant father who comes down with Lyme in tick-filled Rhode Island, and his wife has to figure out how to support the family as his symptoms run rampant. A quote from the movie that I discovered in watching the trailer and some clips made me go, “Oh. Yes,” and I want to share it:

One day, the doctor tells me it’s MS, right? And the next day he tells me it’s..syphilis. [...] What amazes me is that this tiny little bug no bigger than a pimple on your ass…can change your life.

It’s an indie movie, and so it’s not playing everywhere. I still encourage you to go see it, to get your friends, anyone you know, to go see it. This page on the movie’s site shares what dates it opens in what cities; it’s already opened in New York and New Jersey; other places it will be opening in soon are California, Connecticut, D.C., Virginia, Illinois, Massachusetts, and Pennsylvania; opening dates are not given for “Dallas, Detroit, and More,” but we’re told it will be released there.

The other thing I wanted to mention is the Washington Post’s recent article on how cases of Lyme are rising in the DC region:

Cases of Lyme Disease Soar in Washington Region: “The black-legged tick nymphs that have caused Lyme disease reports in the Washington region to soar will emerge with the spring flowers this month, and one thing is certain: They are hungry.

“The black-legged tick is really coming down and taking hold in the Potomac region,” said David Goodfriend, the Loudoun County health director. “There are a great many more ticks in the area than there were a number of years ago.””

I am horrified that this is happening, but I am hopeful that the Post is covering it. The media has slacked off with Lyme, and it needs to step up and show what’s been happening, and it needs to do it soon.

One of the things we all know is how expensive Lyme is; some of us can’t even afford to get to a doctor who knows what on earth they’re actually talking about, let alone then pay for the appointment.

One of the other things we all know is that hitting Lyme from as many fronts as possible is a wonderful idea, and that lots of non-prescription treatments–herbal, or juices–can, actually, help.

One such thing that helps is mangosteen juice.  It’s an antimicrobial that actually kills of Lyme; you’ll herx from using it.  I’ve tried a couple different brands and felt the herx, but all were actually low-levels of mangosteen in the juice–maybe 45% mangosteen and the rest other juices from all over–and all were very expensive.  Granted, you’re talking about drinking two ounces of juice a day, but it still adds up.

Solution: Brazil Botanicals Thai Mangosteen Juice, 32 oz for $16.95 and 85% of the juice is from mangosteen fruit. Also, buy 5, 10, or 15 bottles? You get free shipping.

I called and spoke with someone from the company who informed me the shelf-life was two years for an unopened bottle; that made me think it was worth it to get five bottles at once, especially for fedex shipping. In talking to him, he also told me that apple juice is part of the 15% non-mangosteen juice in the mix; not a problem, but if you’re allergic to apple for some reason, a good thing to know.

Tim–I believe Dr. Tim, actually, who made the juice–was wonderful and helpful, and very kind.

Even if you’re doing prescription antibiotics as well, mangosteen juice may very well be an excellent supplement to help you get some extra kick to those spirochetes.

Know of another mangosteen-juice company that has high amounts of mangosteen in the mix and is affordable? Please let me know and I’ll post about it too! Had luck with other supplements or herbal treatments? Share as well!

Yes, one of you has bitten the bullet, and now we have a lovely new blogger joining us named Fiona!  Please welcome her!

And please help us out by spreading the word; link folk to the site, direct people here, offer to either blog yourself–it can be personal, or you could just blog about news link things–or share your story for someone else to interview you with, or offer to just interview others!  It’s a community, it’s active, and I want to make it more so if at all possible.

Okay, you readers you.  I just upgraded the WordPress for the site, and I’m idly considering a new theme.  But what I want to know most is, what do you guys want?  Are you interested in a new layout, anyway?  I ask that, since it’s not on the following poll, but everything else is!  So answer away!

[poll id="2"]

I want to give you guys the resource that gives you all you want.   I also want to make some news and try and attract more and more attention to this blog from those who don’t know anything about Lyme.  Yes, it’s a resource for those of us who are sick.  Yes, it’s a resource for anyone who knows someone that is sick.

But folks, I want to make some damned noise.  We need to.  The situation with Lyme, the way it’s been handled, is entirely too similar to the early history of AIDs.  And people are dying because of it.

It’s gotta change.  And we’re going to make it change, and in the meanwhile, we are going to help each other get through it.  We will heal.  We will be cured.  We will come out stronger.  And we will still keep working on this, because we’re not going to let anyone else go through the hell we have.  No mother should be weeping because she’s afraid she can’t afford the treatment to get her baby healthy.  No teenager should be so scared he’ll never have a normal life he kills himself.  No adult should ever be humiliated by doctors who blow him or her off and then leave him or her without treatment or help for the pain.

It’s got to change, people.  We’ve got to make it change.  

I’m determined to.  I want as many as you to join me as possible, in whatever ways possible.