Posted 2/10/2010 7:18 PM (GMT -7)
Don't feel bad about not knowing computer terminology, I'm 56 years old and still learning it. Thank God for two computer literate sons who I depend on to help me understand computer stuff and help me out when I make a mess of my computer or have problems with it.
Anyway, a PM means private mail. I just noticed for the first time today (after being here since 2008), it appears the Healing Well forum doesn't have a pm option. However, you will notice on the left side, underneath you name, a bunch of icons. One of them is an email icon (envelope). Your icon is not colored which means you apparently didn't list your email address on your profile. That means there isn't anyway for a member here to contact you privately unless you add your address to your profile. Some people don't like to do that because they don't want everyone to know their email address. Some have other reasons for not listing it, but the point is, if I wanted to give you the name and address of an LLMD, there's no way for me to do that unless you had your email listed on your profile. However, you can click my email icon and I will gladly respond to any questions you have.
Most lyme forums forbid us from posting LLMD names and addresses. I'm assuming that's the rules here too but I may be wrong about that. Maybe CajunGrl (moderator here) or someone else can tell us if that's the rules here. Also, maybe someone can explain how to go about getting names of LLMD's without posting them on a thread. In the mean time, if you'd like some names of some LLMD's in Texas, MO, LA or KS (since they're closest to us) I will be glad to provide you with their names and contact information. Just click my email icon and send me an email and I'll send the information to you.
Of course, the infectious disease doctor here in OKC doesn't believe lyme exists here. That's pretty much they way it is in most states, and OK is no exception. I have a friend who went to the infectious disease doctor here and he refuses to tell him he has lyme disease in spite of all the evidence to the contrary. My wife went to the top infectious disease doctor here in OKC back when she first got bit by a tick. She had the typical bulls eye rash and the infectious disease doctor looked at her rash and said, "that's just an age rash from getting older". How dumb is that?
Back then we didn't know that a bulls eye rash was evidence that you had lyme disease, and according the the Center for Disease Control (CDC), if a person has a bulls eye rash it has to be reported to CDC. This idiotic "infectious disease doctor" denied it was lyme disease and tried to convince us it was spot caused from "old age". My wife was 50 years old when he made that comment. My wife not only saw the tick on her, she pulled it off, but still, the doctor said it wasn't lyme disease. What my wife experienced is very common and typical of what lyme patients deal with on a daily basis.
It's sad, because so many people who don't know any better (like us at the time) believe what these "experts" tell us, in the mean time we go on suffering with this disease and continue to get worse. By the time we finally get a proper diagnosis, the disease has advanced to the point that it becomes harder to treat. Thankfully, my wife was finally diagnosed about two years after her tick bite and was able to be successfully treated after 13 months on antibiotics (abx). She did relapse a couple of years later and had to go back on abx for 8 months but she got well again. She's not what I would call "healed" but she's definitely in remission. By the way, she's a member here too under the name "daisyrlb".
Arguing with your doctor is pretty much a waste of time. Unless you see a LLMD you will not beat this disease, and the longer you allow yourself to be treated by a doctor who's not an LLMD, the more harm you're doing to yourself by putting off getting the appropriate treatment for yourself. I will say this, I am shocked that your doctor offered to do a Western Blot test. Most doctors won't even do that. Is he using Igenex for this test? If not, then the test will most likely not be reliable. Igenex is "the" laboratory for lyme testing, and anything less than that is not considered reliable--in my opinion. Although, there are a couple of other labs that are pretty good too, but this lab is the "cream of the crop"-- the go to place for lyme testing.
However, be warned, since diagnosing lyme disease is primarily a clinical diagnosis, even Igenex test results will often come back negative. The diagnosis for lyme is based more on your symptoms than it is the actual results of your test. If you haven't already read the "New to Lyme" page (on top of the forum list) I strongly encourage you to read it. There's a lot of excellent information listed there, including a "master list" of symptoms that are typical to those with lyme disease. Check it out if you haven't already. Most people who have lyme disease get their diagnosis because they did their research and finally realized that they would never get a proper diagnosis, or get better, until the found a LLMD and got the proper treatment. You have to research this on your own (as you've already learned) and become your own best advocate for fighting this horrible disease.
200 mg of Doxy for six weeks is nowhere near enough for treating lyme disease. This is what all doctors typically prescribe because this is what they're told to do from the infectious disease doctors. You should be taking three times that amount, and typically you will take two or three other abx along with it depending on the LLMD's protocol. Not all LLMDs use the same protocol. The best ones typically follow what's known as Dr Burrascano's Guidelines. There's good information here for you to read and to educate yourself with: http://www.turnthecorner.org/documents/Lyme_Disease_Burrascano_Guidelines_2008.pdf
Some doctors follow Dr B's guidelines and some don't, but the majority of them do. If you are going to be treated with abx, I would suggest you get a LLMD who follows his guidelines. Having said that, there are also a lot of alternative treatments available as well. There's herbal treatments, ozone therapy, homeopathic treatment (what I had) and a few others as well. You'll find a list of alternative treatments at the link I provided you with above, "New to Lyme". Not everyone can handle abx or desire to take them for various reasons. I tried to get well on abx for five years and I just got sicker and sicker. Some people just can't handle abx (I couldn't), some simply refuse to go that route because they believe the risks of taking abx outweigh the benefits. Everyone has to find the path that they feel most comfortable with when it comes to treating this disease.
That's why it's important to do your own research, ask questions, more questions, and even more questions until you get the answers you need to help you decide which protocol is best for you. But whatever you do, don't let some idiotic doctor here in OK (or anywhere else for that matter) tell you that you don't have lyme disease. Get the Western Blot test, look at the list of symptoms, and see a qualified LLMD to get a proper diagnosis. The longer you put off getting the appropriate treatment the harder it is to treat this disease. I didn't know I had lyme disease until over ten years of suffering with it. I finally got diagnosed five years ago. Because of not being diagnosed earlier I now have chronic, late stage lyme disease. I've suffered with major arthritis pain, neurological problems, abdominal pain, and the list goes on and on. Traditional abx treatments failed me, but thankfully, I was able to finally get relief from my symptoms when I went to the Hansa Center in KS. Here's a link to the center if you're interested in knowing more about it http://www.hansacenter.com/ .
Like I said, if you prefer to see a LLMD who treats with abx and follows Dr. B's guidelines, let me know and I'll be glad to send you a list of doctors. Just click my email icon and you'll be able to send me an email and I'll respond back to you with the information.
Feel free to ask any more questions. We're all here to help each other out and to support you in anyway we can.